I’ve often wondered – long before my own cardiac misdiagnosis – how our physicians can possibly correctly diagnose the countless medical mysteries presented to them day after day. The reality, of course, is that no doctor – even the most experienced and skilled – can be 100 per cent certain of the precise cause of every medical problem out there. And if the cause can’t be identified, the mystery won’t likely be appropriately solved.
But when doctors don’t know, how do they communicate that uncertainty to their patients? .
Diagnostic uncertainty is defined as a “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.
We do NOT want to hear that we have what academics call medically unexplained symptoms.2 No patient wants to be told that their distressing symptoms are simply “unexplained”, and no physician wants to say those words out loud to their patients. We truly want our doctors to know how to help us – but if they don’t know (which is not uncommon), there are good ways – and not-so-good ways – to communicate that truth.
An Australian study3 on how family physicians communicate their diagnostic uncertainty has been recently published by Dr. Mary Dahm and her colleagues at the Australian National University’s Institute for Communication in Health Care.
Dr. Dahm’s study examined how diagnostic uncertainty is communicated to patients when family physicians are not quite sure what’s wrong with us:
“Diagnostic uncertainty impacts clinical practice through delayed diagnosis and over-use of healthcare resources, and as a significant contributor to diagnostic error across most medical specialties.
“But patients often arrive with symptoms that change over time, making it difficult for physicians to identify a satisfactory explanation of the patient’s presenting problem. In addition to patient presentation, time constraints of the doctor-patient appointment, complexity of medical science, and limitations of diagnostic tests all influence diagnostic decisions in the midst of uncertainty.”
Communicating uncertainty is important for Emergency physicians who are meeting us for the first time during a medical crisis, as in my case when I showed up with textbook heart attack symptoms. But this communication is even more important for our family physicians, the ones who are typically our initial contact when we first experience distressing symptoms. They know us better than any Emergency doc. We hope.
The Australian researchers report that communicating uncertainty to patients can help to involve us in the diagnostic process and can give us information to help us truly participate in shared decision-making and in informed consent.
Their study identified two overarching categories of communication strategies commonly used by family physicians to manage their diagnostic uncertainty:
1. Patient-Centred Strategies, including:
- reassuring the patient
- empathy (listening, exploring emotions)
- information-giving (providing evidence)
- managing expectations
- interpersonal skills (e.g. humour)
2. Diagnostic Reasoning Strategies, including:
- commenting on the diagnostic process
- explaining the differential diagnosis (the list of medical problems most likely to be causing symptoms)
- information seeking (consulting other clinicians, books, medical journals, internet)
But the Australian researchers reported that some doctors default to the conscious strategy of omission (meaning they decide NOT to reveal to their patients that that they don’t know).
“Clinicians acknowledged they did not always share everything they were uncertain about. But while the doctors believed that patients preferred diagnostic uncertainty to be omitted, patients felt frustrated if their symptoms remained unexplained and uncertainty was not addressed.
“Equally, for some patients, explicit disclosure of diagnostic uncertainty (e.g. “I don’t know what you have. . .”) can trigger negative emotions such as fear, frustration, grief, or anxiety.”
Their study lists some of the reasons doctors may consciously choose not to disclose their diagnostic uncertainty to patients include:
- doctors lacking diagnostic understanding or clarity
- being generally reluctant to disclose uncertainty
- doctors believing patients want a clear answer
- ruling out serious diagnosis without further explanation
Not all patients react in the same way, of course, as Dr. Dahm explained:
“When doctors explicitly communicated uncertainty, patients from professional backgrounds tended to experience loss of control. Conversely, patients from lower educational backgrounds showed greater acceptance of uncertainty.
“And when doctors openly expressed diagnostic uncertainty, listened empathetically, and involved patients in planning, patients often felt reassured.”
When I asked Dr. Dahm if anything had surprised her about their study’s findings, she told me about two surprises:
“To date, most studies have focused on how doctors manage diagnostic uncertainty, and little attention has been paid to what they actually say when they are uncertain. And the very rare studies that attempted to look at what doctors really say often concentrated on only one particular type of uncertainty expression; the direct statement. (e.g. “I don’t know.”)
“Our study was the first of its kind to actually analyse the whole spectrum of what doctors say or don’t say – and I was flabbergasted that no one had ever really looked at the linguistic realities of expressing diagnostic uncertainty.
“The second thing that surprised me was not just the linguistic structures we found, but also the behavioural strategies that doctors use when they experience uncertainty – and whether or not patients even recognize these behaviours as signs of uncertainty.
“For example, when a doctor tells a patient directly ‘I don’t know what you have’ or indirectly hints at uncertainty by saying ‘I think this might be___’, patients are likely to interpret either as uncertainty.
“But what about when doctors comment on the diagnostic process, seek information elsewhere, or provide advice on when patients should seek further medical attention?
“When patients are told ‘You should return if your symptoms don’t resolve’, it may not be immediately apparent to patients that this is one way in which doctors might implicitly express their diagnostic uncertainty. These strategies might not be seen as expression of diagnostic uncertainty by patients”.
I could relate to that last paragraph, because – like many female heart patients misdiagnosed in the Emergency Department in mid-heart attack – I too had been told as I was leaving the hospital to “come back if you get worse.” At the time, I did not consciously interpret that statement as diagnostic uncertainty at all (since it originated from the same cheerfully confident Emergency physician who had just told me flat out: “It’s NOT your heart!”) It seemed more like a routine CYA dismissal, absolving staff of any consequence of our encounter – like saying “See you later!” to people you just want to get rid of.
Ironically, I also felt freakishly relieved at the time by this doctor’s confidently wrong insistence that my cardiac symptoms (central chest pain, nausea, sweating and pain down my left arm) were NOT heart-related. I’d felt so embarrassed for making a fuss over nothing, and for taking up the very valuable time of over-burdened Emergency staff. I couldn’t get out of there fast enough. And like most people, I’d much rather have indigestion than heart disease, thank you very much.
Being confident yet wrong about a patient’s diagnosis is what researchers call “unwarranted certainty“. But that kind of response can be extremely dangerous to heart patients because it is disguised as confident accuracy. See also: Misdiagnosis: is it what doctors think, or HOW they think?
Dr. Dahm’s study suggested that communicating uncertainty through patient-centred approaches (e.g. empathy, reassurance, humour) can actually build better rapport between doctors and their patients. So much depends on how doctors communicate that uncertainty.
And here’s an example of how physicians might consider admitting “I don’t know” in response to their patients’ distressing symptoms. It comes from a longtime reader, heart patient and physician Dr. Anne Stohrer who commented in response to a recent post here about how she communicates diagnostic uncertainty to her own patients (a reassurance that she says is also what she wants to hear from her own physicians when they’re uncertain, too). Instead of pretending to know when she doesn’t, she prefers saying:
“I don’t know, but I will be your partner in trying to figure this out.”
1. Bhise, V. et al. “Defining and Measuring Diagnostic Uncertainty in Medicine: A Systematic Review.” J Gen Intern Med 33, 103–115 (2018).
2. 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.
3. Dahm, M.R., Cattanach, W., Williams, M. et al. “Communication of Diagnostic Uncertainty in Primary Care and Its Impact on Patient Experience: an Integrative Systematic Review.” J Gen Intern Med (2022).
Image: Z. Rainey, Pixabay
Q: Have you experienced a doctor who has told you: ‘I don’t know’?
NOTE FROM CAROLYN: I wrote much more about both doctor-patient communication and diagnostic uncertainty 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).