One of my blog readers needlessly suffered debilitating cardiac symptoms for a number of years before she was finally correctly diagnosed (thanks to a second opinion) with coronary microvascular disease (MVD). During those years, she’d read everything she could get her hands on in a desperate effort to solve this mystery. But when she asked her own physician if MVD might be the culprit, he dismissed this diagnostic possibility, adding that he “didn’t believe” in coronary microvascular disease.
Didn’t believe in it?!
Please note, darling readers, that we’re not talking about the Tooth Fairy here.
We’re talking about a woman living with a cardiac condition that’s been well-studied (as in, peer-reviewed studies done by respected heart researchers and published in actual real-life medical journals).
As a person who also lives with and writes about coronary microvascular disease myself, I feel lucky that both my family doctor and my own cardiologist are believers. Not only that, but my cardiologist referred me to a pain specialist at our hospital’s Regional Pain Clinic who has completed a fellowship in Sweden studying refractory angina caused by MVD.*
I’m not lucky to live with this diagnosis, but I’m damned lucky not to have to rely on physicians like the non-believer that my ill-fated blog reader had.
For too many patients, ending up with physicians who are as knowledgeable as mine sometimes appears to be a crapshoot.
We see clear evidence of this reality in the dismal failure of so many physicians to refer their eligible heart patients to cardiac rehabilitation programs. A number of recent surveys have reported appallingly low physician referral rates in the order of 20% despite the fact that cardiac rehab is a Class I treatment recommendation (which means that “a procedure/treatment should be performed/administered” according to international best practice guidelines because it is proven to improve outcomes and save lives). Yet even when eligible heart patients – particularly women – ask directly for referrals to attend cardiac rehab, too many of their physicians are not only failing to refer them, they’re actively dissuading patients from attending, instead spouting meaningless alternatives like: “Just exercise and eat a balanced diet.” NOTE TO PHYSICIANS: there IS no alternative to a supervised program of cardiac rehabilitation.
So much of medicine in general, as I’ve observed frequently, is simply trying to figure out what the problem is NOT.
A study published in the American Journal of Medicine reported that the role of diagnostician remains one of the most challenging roles of any physician.(1) Researchers estimated that physicians carry two million facts in their heads just to fulfill this unique role.
And with medical knowledge expanding rapidly while also becoming increasingly specialized, and with 13,000 known medical conditions, no individual doctor can be an expert in all conditions across all specialties based on personal training and knowledge alone.
If they aren’t willing to acknowledge this reality – if they continue to believe they’re correct simply by virtue of the letters M.D. after their names as my blog reader’s doctor was – here’s what can happen, according to Dr. Jerome Groopman in his excellent book How Doctors Think. He warns:
“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.”
It may surprise such physicians to learn that patients who live with rare or chronic illness often report that they know far more about their condition than their physicians do. It’s called having “skin in the game”.
It’s important to keep in mind that physicians have plenty of book knowledge about what’s happening to other peoples’ bodies. But until they’re the ones walking a mile in those hospital booties, they may have no clue about what day-to-day life is actually like for those patients. If they did, they wouldn’t be nearly as gobsmacked as they appear to be when they’re the ones suddenly lying on the hospital gurney.
Consider, for example, Annette McKinnon. She is a Toronto blogger and patient activist who lives with two debilitating conditions: rheumatoid arthritis and an immune system disorder called Sjogren’s Syndrome. Annette mused recently on Twitter:
“I am aware of more than my doctor sometimes, especially in my disease area.
“It matters more to me.”
In one of the most interesting studies on what it’s like for patients who know more than their physicians, people living with Type 1 diabetes were interviewed about their experience after completing comprehensive patient education courses.(2) Specially trained teams of two health care professionals (a Diabetes Specialist Nurse and a dietitian) did the teaching for these courses.
But lead researcher Dr. Rosamund Snow and her colleagues at King’s College London found surprising pushback from the physicians of these educated patients in reaction to their increased knowledge of diabetes:
“Both post-course and several years later, most participants spoke of the experience of taking part in this education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes.
“However, interactions within the health system following patient education could be fraught.
“Participants emerged from the course with greater condition-specific knowledge than many of the health care professionals they encountered.
“When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients’ ability to continue effective self-management.”
So this is a good news/bad news story. The good news: taking a useful patient education training program is “life-changingly positive”. Bad news: the same condition-specific training, warns Dr. Snow, can bring “expertise taught to patients in one branch of medicine that can be considered non-compliant by those who are not specialists in that field.”
For example, Dr. Snow concludes:
“Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions.
“Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.”
The participants in Dr. Snow’s study already had a well-recognized diagnosis (Type 1 diabetes) that is covered in all med school training – yet these educated patients still knew significantly more about the disease than their primary care physicians did.
But even worse, they then faced lack of support from physicians who felt threatened or undermined by their well-educated patients.
Just imagine being a patient living with a diagnosis that most physicians are NOT as familiar with (like coronary microvascular disease, for example – or like Spontaneous Coronary Artery Dissection – SCAD).
A similar circumstance happened to Katherine Leon. At just 38 years of age, she had a heart attack following the birth of her second child, caused by SCAD.
But it took six full days of being repeatedly told by doctors “It’s not your heart!” – until she finally underwent cardiac catheterization and emergency double bypass surgery.
Having survived what most doctors believed at the time was a rare and usually fatal heart condition, she went on to learn as much as she could about this diagnosis. She was even instrumental in convincing Mayo Clinic cardiologist Dr. Sharonne Hayes to undertake groundbreaking SCAD research – which suggested for the first time that SCAD isn’t rare after all – it’s just rarely correctly diagnosed. (Read more of this amazing story as reported in The Wall Street Journal).
Six years of tenacious digging and researching her diagnosis (including input from other SCAD survivors she found on WomenHeart’s online support community) gave Katherine a degree of expertise in this often-misunderstood diagnosis beyond that of any physician who has little experience with SCAD survivors (i.e. most of them).
How did her journey from patient to expert begin? In her own words:
“The process started as one furiously angry Momma who wasn’t going to take, ‘Get over it!’ for an answer one minute longer.”
Katherine’s comment reminds me of a further impossible dilemma facing patients who do realize that they might be more knowledgeable than their physicians about their specific condition: how to communicate their expertise/opinions to doctors in a way that won’t get them labelled a “difficult patient“?
Despite this possibility, I encourage all patients to become as informed as possible about their own diagnosis, and to work in partnership with a physician they can trust. There is simply no excuse for not educating yourself about your health.
What I tell the heart patients on my blog and in my presentation audiences is that they too must now become the world experts on their own particular diagnosis. Or as another of my readers once spelled out succinctly to her own physician:
“This is your career – but it’s my life!”
Katherine Leon is a good example of such an expert, and she is blunt in her assessment that motivated patients are indeed capable of understanding complex medical information when it affects their own lives, as she explained:
“The whole idea that patients are stupid is half the hurdle. Just because you are sick, doesn’t mean you aren’t intelligent or your brain doesn’t function!
“I can Google, read professional journals, and ask questions of the experts.”
And so can you.
* Refractory angina is a form of chronic coronary artery disease for which both conventional medication therapies and revascularization procedures are ineffective. Patients typically experience debilitating symptoms of chest pain, shortness of breath, and crushing fatigue.
NOTE FROM CAROLYN: I was terribly saddened to learn that last month, Dr. Rosamund Snow died suddenly by suicide. I first met her online when she contacted me in her role as Patient Editor at the British Medical Journal (BMJ). This brilliant, funny and fierce champion for the patient voice in her journal had, according to her husband Stephen, suffered from depression for some time. Rosamund was instrumental in helping me with all of my essays published in the BMJ. I first wrote about her research paper called “What Happens When Patients Know More Than Their Doctors? here in 2015. Rest in peace, dear Rosamund. . .
(1) Pauker SG, Gorry GA, Kassirer JP, Schwartz WB. Towards the simulation of clinical cognition taking a present illness by computer. Am J Med 1976;60:981-96.
(2) Snow, R. et al. What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study. BMJ Open 2013; 3:e003583 doi:10.1136/bmjopen-2013-003583
Q: What has helped you to become an expert in your own diagnosis?
- When you fear being labelled a “difficult” patient
- When doctors can’t say: “I don’t know”
- A second opinion from Dr. Google
- Your health care decisions: don’t worry your pretty little head over them
- Patient bloggers at health conferences: ‘real’ journalists?
- Doctors who aren’t afraid of “Medical Googlers”
- Your health care decisions: don’t worry your pretty little head over them
- When doctors become patients
- Misdiagnosed: women’s coronary microvascular and spasm pain