by Carolyn Thomas ♥ @HeartSisters
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.
If you’re a female patient, however, we can’t pretend not to know about research like the Swedish study published in the journal Pain Research and Management, which found that medically unexplained conditions often go along with “an unwillingness among professionals to believe the women’s symptoms in the first place.”
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).
Heart Sisters 
I just have to chime in again.
I am in the midst of an “I don’t know” Chest Pain work-up where no one has said I don’t know!!!
I just realized that a phrase I have heard from doctors 4 times in the last week is a disguise for I don’t know. The phrase I keep hearing is “That’s reassuring” when a test comes back with a negative result. Like negative troponins or a negative stress echo. I have always wondered why I don’t feel “reassured”. Now I know why. It’s because They Don’t Know.
I DO know something is wrong, and I will just keep being the the ever-so-kind squeaky wheel until I get answers. . .
I wish I could transport myself to the Women’s Cardiovascular Clinic at Mayo Clinic.
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Hi again Jill – that’s just what Dr. Dahm and her Australian colleagues found, too – “it may not be immediately apparent to patients that this is one way in which doctors might implicitly express their diagnostic uncertainty. . .”
Doctors who say “That’s reassuring” about negative diagnostic tests are the ones who might feel “reassured” because (a) they’re not the patient, and (b) it helps them move on because the “reassuring” latest results reduce the odds that their specialty is responsible for diagnosis/treating.
That reminded me of my second trip to the cath lab a few months after my heart attack (ongoing severe chest pain that my cardiologist suspected might be “stent failure” (there’s an encouraging diagnosis for you!) When the interventionalist who did my second cath procedure assessed that my latest stent was NOT blocked, he wrote “NON-CARDIAC” with a cheerful flourish on my charts. It was good news for him – but devastating news for me: because if this pain wasn’t from a newly blocked stent, then what WAS the problem? Nobody seemed to care once the words ‘NON-CARDIAC’ were permanently recorded in my chart. He went home for dinner that day feeling reassured (I was now somebody else’s problem) while I went home for dinner in complete despair. There was no further discussion about what WAS causing my cardiac pain (which was later correctly diagnosed as coronary microvascular disease (which by the way IS indeed a CARDIAC condition).
I’ve heard similar stories from countless women whose cardiologists have confidently reassured them what the problem is NOT, but not what the problem actually IS.
Take care Jill – I sure hope you and your physicians can solve this distressing mystery soon. ♥
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Question for you: As a person with an actual diagnosis of microvascular disease: Is one of the symptoms that Chest Pain frequently occurs AFTER you have exercised instead of during exercise?
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Good question: actually, it depends (how’s that for an unsatisfying answer?!) My understanding is that most MVD patients do report chest pain during exertion – similar to typical angina (pain on exertion, relief when at rest). But some MVD people seem to have a delayed response to exertion.
Many cardiologists recommend that “what damaged hearts need is work, not rest”. I’ve learned since my osteoarthritis diagnosis that this is also what’s recommended for OA too: the more we move, the better our painful joints feel. It’s counter-intuitive, because when we feel pain, we instinctively try to protect the sore bits by not moving them.
A small 2021 study published in the journal Medicine & Science in Sports & Exercise suggests: “Exercise is well known to improve vascular health and has the potential to improve microvascular function in aging and disease.”
The other interesting thing about MVD is that patients often report that the longer they live with the diagnosis, the less painful their symptoms are during exertion. I’ve been living with this diagnosis for almost 14 years now, and I can tell by my weekly nitro usage stats that I’m needing nitro less often than I was for the first few years.
Hope this helps, Jill. Take care. . . ♥
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Oh No! I’ve been labeled non-cardiac and sent to my PCP. To be continued. . .
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Hi Jill – “non-cardiac” would NOT be as concerning IF ONLY it were accompanied by an offer of potential alternative diagnoses and further tests to consider. But since that list is rarely offered, it leaves you with the impossible dilemma: so it’s “non-cardiac” but what IS it?
Right now, you simply do not know yet. All you know is that SOMETHING is causing your symptoms – which may or may not be heart-related. Just to review a list of potential culprits, read this about what can often cause chest pain (both cardiac and non-cardiac) – something here might ring a bell.
Meanwhile, I know you will not just let this slide if you don’t find the answers you need.
Take care, stay safe. . . ♥
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Interesting timing. There was an article in The New York Times this week – “E.R. Doctors Misdiagnose Patients With Unusual Symptoms“ – is it because they’re hesitant to say “I don’t know?”
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Hi Andrea – Thanks for sending that link. I suspect that this hesitancy might have something to do with subsequent misdiagnoses, and emerging studies also suggest that to be true: e.g. “Diagnostic uncertainty is a significant contributor to diagnostic error across most medical specialties. . .”
And physicians are trained to come up with the most likely probable cause of symptoms (they are taught: “When you hear hoofbeats, think HORSES – not zebras!”) This reminds docs to first think about what is likely a more common reason, rather than an obscure or rare diagnosis. So it’s not surprising that “unusual symptoms” can end up being misdiagnosed! – and the more unusual, the less likely a ready diagnosis will appear – as Patricia’s comments (below) about her own rare disease suggest, too.
Thank you again – Take care and stay safe. . . ♥
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I developed Stevens-Johnson Syndrome from the first Astra Zeneca Covid vaccine.
SJS is so rare, one in a million. The GP didn’t know what it was. The hospital didn’t know what it was, I was put on a Geriatric, Senile Dementia ward as I was 74. NICE guidelines say SJS should be treated in ICU on a burns unit. I matched pictures on my iPad until I could identify it as SJS.
In the end the care was so inappropriate I discharged myself. This was after being told my first HA was indigestion, went onto have a second, 5% chance of survival. I don’t have much faith in the medical profession now.
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Hello Patricia – what a nightmare you have been through. I’m sorry you had to endure all that. It’s horrific that you had to investigate pictures on your own iPad to get appropriately diagnosed. Just awful for you, yet sadly, not really surprising.
You’re so right: SJS is extremely rare. Most physicians in fact will never meet a living SJS patient during their entire career.
I had an opportunity to learn much more about this very rare condition when a close friend spent six weeks in hospital once she was finally correctly diagnosed with SJS (her original misdiagnosis in Emergency was Bell’s Palsy (!) which even I knew was NOT what she had!)
In her case, she was moved from Emergency up to the Respiratory floor due to hospital bed shortages. She should have been moved to the Complex Wound Care floor (aka the Burn Unit in most hospitals). Every inch of skin and mucous membranes over her entire body were horribly affected. The worst damage was to her eyes, unfortunately permanently damaged by SJS, resulting in sudden and total blindness. Two friends and I took shifts sitting at her bedside from dawn to dusk every day for weeks once we realized how dreadful her care was (meals were left on her tray table by kitchen staff while she was asleep for example – and then picked up by the same staff untouched an hour later). Nurses would march into her room calling out “Good morning!” as if they’d forgotten she was blind and couldn’t see who was walking in. We had to put reminder notes on her door to hospital staff that she was BLIND.
The respiratory nurses tried their best at fashioning rag-tag gauze bandages for her bloody back and arm wounds every morning – but unlike the well-trained nurses on the Complex Wound Care unit upstairs, few if any had experience as respiratory nurses in how to manage this very specialized task successfully. When the physician from Wound Care upstairs finally came down to consult and recommended that she be moved immediately upstairs to his unit, the hospitalist (the HOSPITALIST!) convinced my friend that she was already being very well cared for here by very nice nurses and she didn’t NEED to be moved upstairs. She agreed – and so continued to received sub-standard care by staff who had never before cared for an SJS patient.
Speaking of rare diseases, once word began to spread that an SJS patient had been admitted, my friend started getting impromptu visits – often interrupting her much-needed sleep – from an endless parade of doctors and nurses (both working in the hospital and even out-of-town clinicians) who wanted to see for themselves this rare patient – until we finally urged her nurses to limit visitors – just to allow her to get some rest.
Patricia, you have already suffered more than your fair share of awful medical crises. I hope you will find comfort and healing in your very near future.
Take care, stay safe. . . ♥
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Sorry for spelling your name incorrectly. . . Distracted by jaw pain ;-(
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Not a problem, Jill. I have an old friend (25+ years) who STILL calls and spells my name as CAROLINE! I answer to all. . .
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Recent headline:
“More than 7 million incorrect diagnoses made in US emergency rooms every year, government report finds. A new study finds that nearly 6% of the estimated 130 million people who go to US emergency rooms every year are misdiagnosed, which translates to about 1 in 18 patients getting the wrong diagnosis.”
I thought of you Caroline when I read this.
I have not heard “I don’t know” directly but my cardiologist used to always ask me “What are your thoughts?” whenever he proposed a diagnosis and treatment. I interpreted that as a respect for my background in nursing rather than an I don’t know.
I’m off to a stress echo this week, Hoping for that elusive definitive answer to a constellation of symptoms involving intermittent chest pain, stomach pain and jaw pain with negative troponins. Is it 3 different problems or one cardiac problem? I definitely Don’t Know but hoping someone does!
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Jill, it’s so interesting that you mention the misdiagnosis rate in US Emergency departments (not unique to the USA, of course!)
When I was interviewing Dr. Dahm in Australia about her research on communicating diagnostic uncertainty, she made a casual remark about how “Emergency physicians do not diagnose”, adding that “the question about whether or not ED doctors diagnose is highly contested within the specialty” – which I’d never heard before. Have you?
It seems to me that, until we are able to get past the Emergency gatekeepers, no heart patient will be sent up to the cardiac unit for treatment. Isn’t that “diagnosing”? Or perhaps unless it’s a very specific diagnosis (“this person has myocarditis!”) it doesn’t count if they simply narrow down the diagnosis to the general neighbourhood of cardiovascular disease, and let the cardiologists upstairs come up with the REAL diagnosis?
I think I’ll have more on this in a future post after I chat with some of my Emerg doc pals.
I like that doctor’s question: “What are your thoughts?” I wish all docs would add that to their diagnostic discussions – who knows what might turn up!?
I sure hope that the mystery of your constellation of symptoms is solved very soon. Take care, stay safe, and Happy Christmas to you. ♥
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