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.”
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.
Bhise, V. et al. “Defining and Measuring Diagnostic Uncertainty in Medicine: A Systematic Review.” J Gen Intern Med 33, 103–115 (2018).
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’)