by Carolyn Thomas ♥ @HeartSisters
The Emergency physician who misdiagnosed my heart attack displayed not even a whiff of uncertainty while delivering that misdiagnosis. “YOU” – he declared confidently – “are in the right demographic for acid reflux!” (without any gastrointestinal diagnostic tests). He sent me home that day with instructions to ask my family doctor to prescribe antacid drugs for my symptoms (central chest pain, nausea, sweating and pain down my left arm). I now suspect that, if only that confident doc would have bothered to Google my symptoms, both he and Dr. Google would have landed on the same search result: myocardial infarction (heart attack).
But in fact, he seemed remarkably certain despite being remarkably wrong. .
Dr. Jerome Groopman is a Harvard professor, medical researcher and author of the landmark book, How Doctors Think (which by the way, should be required reading for all med school students). He describes what he calls a “cascade of cognitive errors” that can occur when physicians are uncertain about diagnostic decisions:
“Physicians, like everyone else, display certain psychological characteristics when they act in the face of uncertainty. There is the over-confident mindset: people convince themselves they are right because they usually are. But biology, particularly human biology, is inherently variable. Those variations, at times very small and easily ignored, can prove important.”
“Specialists are susceptible to diagnosis momentum: once an authoritative senior physician has fixed a label to the problem, it usually stays firmly attached because the specialist is usually right.
“Specialists in particular, are known to demonstrate unwarranted clinical certainty. They have trained for so long that they begin too easily to rely on their vast knowledge and overlook the variability in human biology.”
I believe that the unwarranted certainty Dr. Groopman describes is far more dangerous to heart patients than any physician who can honestly say: “I just don’t know.”
While most medical diagnoses are correct most of the time (Berner, Graber 2008), physicians in general under-appreciate the likelihood that their own diagnostic certainty might be unwarranted, succumbing to overconfidence in their own diagnostic abilities. Diagnostic errors occur in every specialty, with rates as high as 12 per cent in Emergency Departments and 15 per cent in clinical medicine.
Diagnostic uncertainty is defined as the “subjective perception of an inability to provide an accurate explanation of the patient’s health problem).” 1 The trouble is that what all patients hope for during medical encounters is certainty – not uncertainty. We never want to hear our doctors tell us that we have medically unexplained symptoms. As the U.K. authors of one study on diagnostic uncertainty observed in typically understated fashion: 2
“Effective management of medically unexplained symptoms poses a challenge to doctor-patient communication. Presentations challenge medical understanding of symptoms, and patients are often dissatisfied with the explanations provided.”
“Often dissatisfied?!”
No kidding. . .
In other words, we’d like our doctors to know how to help us. That’s what all patients hope for. It turns out that diagnostic uncertainty can have far-reaching effects on patients, on the clinicians who are helping us, and indeed, on entire healthcare systems (the latter through over-testing, increased healthcare costs, hospital re-admissions, and decreased trust in the system).
Diagnostic uncertainty is also often the topic of researchers who study over-diagnosis – not just the under-diagnosis still observed in women with heart disease.
It’s important to know that uncertainty is common – yes, even among experts.
If initial diagnostic test results are interpreted as “normal”, most physicians move along to the next most likely reason for symptoms – what doctors call their differential diagnosis. This is a list of the possible conditions that might produce a patient’s symptoms and signs, enabling appropriate testing to rule out possibilities and to confirm a final diagnosis.
The reality, however, for many patients – in the rare disease community, for example – is that in some cases, it can take years to solve their medical mysteries. Few other patients share their diagnoses, and few physicians have ever encountered anybody like them. And if the patient is a child, it means that the caregiver/parents may not feel the relief and comfort of being supported by others who understand what they’re going through. It’s also why online support communities are so valuable for the rare disease community.
Not only do these people and their family caregivers suffer, but the suffering is magnified because they feel isolated and fearful. Diagnostic uncertainty is often a frightening fact of life for families living with a rare disease.
Even patients who don’t have symptoms of a rare disease can arrive at the doctor’s door with symptoms that can change over time, making it difficult for physicians to come up with a satisfactory explanation of their clinical problems. Patient presentation, the time constraints of the patient–doctor appointment, the complexity of medical science, and the limitations of some diagnostic tests – each can influence diagnostic decision-making.
As it did in my own case, a physician’s unwarranted certainty can – not surprisingly – lead to diagnostic error (a missed, delayed or incorrect diagnosis) which by definition can then lead to missed, delayed or incorrect treatment. See also: Misdiagnosis: the Perils of “Unwarranted Certainty”
I was sent home from that Emergency Department after being misdiagnosed feeling supremely embarrassed. I’d just wasted their valuable time making a fuss over nothing. I felt mortified to learn that I was apparently incapable of telling the difference between a serious heart attack and simple indigestion. And even worse, an Emergency nurse had scolded me sternly for asking questions: “He is a very good doctor. He does NOT like to be questioned!” (The only question I had asked her colleague before being sent away was this one: “Doctor, what about this pain down my arm?” – which I thought at the time was a perfectly reasonable question).
And back home again, when my symptoms worsened (which, of course, they did) I ‘knew’ it wasn’t my heart because a man with the letters M.D. after his name had confidently told me so. There was no way I was going back to that Emergency Department to be further embarrassed over a little case of indigestion. That physician’s ultra-confident misdiagnosis had utterly convinced me.
Dr. Allen Francis, writing in his Psychology Today column, flags what he calls the “unrealistic expectation (held by doctors and patients alike) that every medical presentation can be accurately diagnosed and effectively treated. When, as so often is the case, this expectation is defeated by the hard reality of our limited knowledge, doctor and patient are both likely to feel grave disappointment.”
He also quotes Maryland neurologist Dr. Nicholas Capozzoli, who offers this unique perspective:
“In my neurology practice, I often can’t make a specific diagnosis even after taking a careful history, doing a thorough physical exam, and ordering all the appropriate diagnostic tests. Such uncertainty is inherent in most of medicine- it is sad but true that lots of problems elude our current medical tools and knowledge.”
“My challenge is to be helpful and to maintain a healthy doctor/patient relationship even when I can offer no clear answers to diagnosis or treatment. Doctors tend to be uncomfortable admitting uncertainty to themselves or to their patients. Too often, they feel it’s a threat to their skill, authority, or expert status to say they simply don’t know what’s causing the symptoms. Often enough, doctors default to blaming the patient with an explicit or implicit ‘it’s all in your head’.”
Dr. Groopman writes that, paradoxically, taking uncertainty into account may actually enhance a physician’s therapeutic effectiveness:
“It can demonstrate the physician’s honesty, willingness to be more engaged with patients, commitment to the reality of the situation rather than resorting to half-truths, evasion and even lies. And it makes it easier for the doctor to change course if the first strategy fails, to keep trying.
“Uncertainty is sometimes essential for success.”
That last line rings true for me. Admitting “I don’t know” is NOT the same as saying “I don’t care.” I’d much rather hear a physician say “I’m not certain yet.” I’d much rather hear a physician say: “You’ve done the right thing by coming in today.” I’d much rather hear a physician say: “I believe you.” I’d much rather hear any of those responses than the quick unwarranted certainty of the Emergency doc who sent me home feeling embarrassed in mid-heart attack.
Meanwhile, what can patients do when we truly believe it’s time to rethink a physician’s initial diagnosis? Dr. Groopman recommends that we ask these questions of the doctor:
- “What else could it be?” Dr. Groopman warns that the cognitive mistakes that account for most misdiagnoses are not recognized by physicians; they largely reside below the level of conscious thinking. When you ask simply: “What else could it be?”, you help bring closer to the surface the reality of uncertainty in medicine.
- “Is there anything that doesn’t fit?” Dr. Groopman believes that this follow-up should further prompt the physician to pause and let his/her mind roam more broadly.
- “Is it possible I have more than one problem?” Dr. Groopman adds that posing this question is another safeguard against one of the most common cognitive traps that physicians can fall into: search satisfaction. It should trigger the doctor to cast a wider net, to begin asking questions that have not yet been posed, to order more tests that might not have seemed necessary based on initial impressions.
NOTE FROM CAROLYN #1: I’ll be writing more soon about a recent Australian study on what works – and what doesn’t – in communicating diagnostic uncertainty to patients.
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Bhise, V. et al. “Defining and Measuring Diagnostic Uncertainty in Medicine: A Systematic Review.” J Gen Intern Med 33, 103–115 (2018).
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Peveler R. et al. “Medically unexplained physical symptoms in primary care: a comparison of self-report screening questionnaires and clinical opinion.” J Psychosom Res 1997;42(3):245-52.
♥
Q: How do you feel about a physician saying “I don’t know” when diagnosing you?
Image: Steve Buissinne, Pixabay
NOTE FROM CAROLYN #2: I wrote much more about diagnosis and misdiagnosis 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 JHUPress code HTWN to save 30% off the list price).
♥
NOTE FROM CAROLYN #3: I’m not a physician, so please do not leave a comment listing your symptoms. I can’t offer advice (except ‘See your own doctor for medical opinions’)
Heart Sisters 
My atrial fibrillation was initially diagnosed as “you are just having a panic attack”. It took many trips to the doctor and Emergency and dogged determination before I was even sent to a cardiologist, and I really had to push for cardiac ablation.
All too often, women are misdiagnosed, especially when it comes to heart problems. Physicians need to look at the big picture.
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Hello Susan – I’m so sorry you had to go through that. As you already know if you’ve read any other posts here, you are not alone. Many studies report that female heart patients are significantly more likely to be under-diagnosed compared to our male counterparts, and WORSE (as in your case) under-treated even when appropriately diagnosed.
When I hear maddening stories like yours about women being dismissed by doctors, I automatically ask myself what would have happened had a man been the one showing up with atrial fibrillation symptoms.
Men do NOT have to fight to be believed.
Women do.
Aaarrrrrrrrrrgh! 😠
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So true, Carolyn. My husband has heart problems and has never had any issues with immediate treatment and testing procedures. The minute he mentions chest pain to Emerg, he is seen right away. When I first went to Emerg with angina, my bp was in the stroke range, yet I was sent away with just advice to see my GP.
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That is appalling, Susan! I wrote about a couple who (freakishly coincidentally) happened to have their identically diagnosed heart attacks about a week apart. The difference between how the husband was treated compared to the wife is amazing – and this was just five years ago.
Don’t read this however until you take your blood pressure meds!
Take care, stay safe. . . ♥
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When the docs could not settle on a diagnosis, they decided it was Rheumatoid Arthritis and told me it was going to ravage every joint in my body if I didn’t take Methotrexate, a drug used for treating cancer.
I said, NO THANK YOU and many years later I was diagnosed by different doctors as having heart issues and an aortic aneurysm that was not caught back then.
I’m glad I didn’t take that drug and would have rather that they had said they didn’t know what was wrong with me. By the way, now about ten years later and the joints in my body that I did not hurt in subsequent years are all just fine. I don’t have RA!
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Hi Robin – I wonder if on some level, you knew back then that your diagnosis wasn’t RA. I believe we have an intuitive sense of what our bodies are experiencing. It would have been even better if the docs who misdiagnosed you had decided to refer you to a rheumatologist (who could have confirmed or rejected their guess). If doctors do not know, they could remember to consult a colleague who DOES.
Take care, stay safe. . . ♥
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Thats just it, the primary care doc DID send me to an RA specialist who worked me over with visual and lab tests. She made my visual tests fit her diagnosis even though the lab tests did not support that I had RA.
Oh I knew it was an incorrect diagnosis, that is why I refused to take the Methotrexate. A friend of mine who worked for Kaiser said that RA is the go-to diagnosis when they can’t seem to find anything else to diagnose you with.
Very sad that they just can’t say I don’t know – and instead have patients who don’t need certain drugs take them. I have heard that doctors believe that a patient is not satisfied after an in-office visit unless they go away with a prescription for some drug.
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Good grief, Robin! Rheumatoid arthritis is a “go-to” diagnosis?!?! It can now line up behind anxiety. . .
I too think it’s sad that in the face of uncertainty, the doctor that you describe cannot simply say “I don’t know.”
Why couldn’t they say what my reader Dr. Anne Stohrer wrote (below) about what she says to her own patients when she’s unsure of their diagnosis.
“I don’t know but I will be your partner in trying to figure this out.”
I believe that many patients may indeed feel they’re not getting good care unless they go home with a prescription in hand, but shouldn’t it be an appropriate prescription and only as needed?
Sheeesh!
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My mom was sent away by Kaiser and told to get some Tylenol when she was complaining about severe back pain. It turns out she has sepsis and is now in the hospital being given intravenous antibiotics. Long term issues may result, but she is improving – after visits to their doctor where she was just given drugs that did not address an infection, and advice to get over-the-counter pain relievers to cover up the problem.
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That’s so frightening, R – misdiagnosed sepsis can be fatal. I hope your mother will feel much better soon. Good luck to both of you. . . ♥
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I appreciate honesty, and though hearing “I don’t know” might be disappointing, it is welcome over a wrong diagnosis.
What I’d like to hear after that statement is, “Let’s work on this together.” Which tells me the doctor is not throwing up his hands, that he has compassion for my suffering, he values me and my input into the diagnostic process and he is willing to take the time to gather more information to see if there is a a more satisfactory resolution to the situation.
Dr Groopman’s questions are one way to try to lead the horse to water.
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Hi Jill – YES! Love that “let’s work on this together” addition. I also love that list of what a doctor who says that kind of thing is actually saying (silently!) to patients.
While I was writing this, I couldn’t help noticing that most of the research recommendations to address diagnostic uncertainty/unwarranted certainty in medicine are aimed at patients (e.g. Dr. Groopman’s three questions to ask your doctor if the diagnosis doesn’t seem correct) – as if it’s the patient’s job to control how doctors diagnose patients.
I know patients need to be on the ball when their own future is concerned, but isn’t the patient usually the sickest person in the room during these encounters?!?!
Take care, stay safe. . . ♥
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I thought exactly the same thing!
If more doctors would remember they are practicing an art that, that has nuances that often break what they think are absolutes, We would all be better off.
As an SICU nurse I became an expert at leading the horse to water, working with surgeons, who, bless their souls, seem to be born with awfully large egos. I had to twist myself in knots presenting clinical situations that needed addressed so that the surgeon believed they thought of the answer.
Even though I was the one who gave it to them. . . LOL!
We all need to bring our best to the table, and using Google gives us really good questions to ask. If a doctor feels threatened or upset by that, or tells you to stop reading the internet, You have the wrong doctor.
Just another note I can’t pass up. The role of the ER nurse in your nightmare mis-diagnosis was appalling. As a retired nurse, her actions really ticked me off. A nurse is entrusted with the sacred duty of advocating for patients who are in a vulnerable position and are unable to advocate for themselves. They are not there to defend doctor’s egos!!!
She should have been encouraging you to continue to speak up about your symptoms and/or approached the doctor for you about your continuing concerns.
Sorry I wasn’t there. 😦
I don’t remember, did they even draw troponins while you were there?
Blessings, thanks for the opportunity to share.
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Hi again Jill – Thanks for your astute observations about “that nurse”. It means a lot especially coming from a nurse, because you already know how appallingly inappropriate her behaviour was that day.
I worked for many years in the same hospital that would one day send me home from Emerg with my misdiagnosed heart attack. When I told my nurse friends upstairs what ‘that nurse’ had told me, they were livid. I practically had to restrain them from marching down to the Emergency Department, and smacking her upside the head. I knew at the time that none of the nurses I worked alongside upstairs would ever dare to speak to a patient like that – so damaging to the reputation of the nursing profession. All good nurses are appalled by how she spoke to me. Ironically, I felt so utterly humiliated by her outburst that I couldn’t get out of there fast enough. All I knew was that I was being the “difficult patient” and had to leave. It took me days to get angry. (I was also busy with my worsening cardiac symptoms, so there’s that too. . .
And yes, staff in Emerg did two consecutive troponin tests. Typically these are taken two hours apart – but in my case, the blood draws were taken back to back. Both results were within normal limits – which I later learned was not uncommon in women’s cardiac diagnostic tests – particularly cardiac enzyme blood tests.
Thanks again for being appalled on my behalf, Jill! ♥
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“I don’t know but I will be your partner in trying to figure this out.”
That’s what I say and that’s what I want to hear.
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Hello Dr. Anne – I LOVE THIS!
If only more doctors were more like you. . .
Thank you for what you do!
Take care, stay safe. . . ♥
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Another excellent and thought-provoking column, Carolyn.
I have “sat on the other side of the desk” as a “diagnostician”, but not as a physician. I know the temptation and perils of being too sure of one’s own opinion in reaching a conclusion rather than entertaining the possibility of other data-driven facts that argue against it.
In situations of patient-doctor or client-expert interaction, honest communication is needed and enough humility and strength to admit when you do not know the answer and what further steps are needed to find it.
Although there is a lot of misinformation, based on half truths and opinion paraded as “fact” on the internet, don’t you think that Dr. Google and the internet have shifted the patient/client-doctor/expert relationship for the better in this regard?
Patients come into the doctor’s office better equipped to ask questions and doctors know that there’s a high probability that the information they give will be looked at carefully to “confirm and understand” through an internet resources?
Just want to say that your wonderful weekly columns provide a valuable resource to women about heart health. You have turned your own personal experience of “sour milk” (a heart attack at a young age) into “whipped milk” (your informative, helpful columns for others). In appreciation!
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Hello Maxine – thank you so much for your kind words.
If only physicians (and other diagnosticians) weren’t so averse to saying the words “I don’t know the answer”. You’re so right about adding “what further steps are needed to find it”. I think that’s the missing piece: “I don’t know YET, but I’ll do my best to help you find out what’s wrong.”
I agree with your Dr. Google assessment! While I know some docs cringe at the Google search results some of their patients bring in, I suspect that’s because patients often land on quackery sites (like Mercola, Mindell, Oz, etc.) But patients WILL consult quacks if they don’t know where else to go.
That’s why I’ve always thought doctors should create their own curated list of credible online health sites (whatever they’re most comfortable recommending) and then hand out copies of this list to every patient – with the clear message that if they need more information, they will probably find reliable facts if they consult this list.
Years ago, when I was sitting in the ICU at the bedside of a seriously ill friend late one night, the ICU doc came out with a page from Up To Date’s patient portal that he’d printed for me – so I could read some background on her serious but rare diagnosis. Here’s a sample of their Heart and Blood Vessel “basics”.
Personally, I wouldn’t buy a coffeemaker without first Googling brands, features, cost, etc. – so why wouldn’t I go online for something as important as my own health? Patients are already on Google – so telling them to stop Googling (as the Belgian government did a few years ago in their unfortunate public awareness campaign) is not going to work.
Take care, and stay safe out there. . . ♥
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