by Carolyn Thomas ♥ @HeartSisters
I’ve often suspected that if only the E.R. doctor who misdiagnosed me with indigestion had bothered to just Google my cardiac symptoms (chest pain, nausea, sweating and pain radiating down my left arm), he and Dr. Google would have almost immediately hit upon my correct diagnosis: myocardial infarction, or heart attack. But instead, he pronounced that I was “in the right demographic” for acid reflux. I was sent home that day feeling horribly embarrassed for having made a fuss over nothing but a case of indigestion. As time went by, however, and my debilitating symptoms became truly unbearable, I turned to Dr. Google.
And that’s why I forced myself, despite my embarrassment, to return to the E.R. – but with the pronouncement of that first E.R. doc still ringing in my ears:
“It is NOT your heart!”
Many physicians out there, however, are not happy when their patients consult Dr. Google to research troubling symptoms like mine.
A female heart patient from Wisconsin, for example, shared recently:
“When I first began discussing my condition with my doctor, he said he hadn’t realized I was a doctor. I told him I’m not a doctor, but I am a very good researcher. He gave that small, insulting half-laugh that doctors reserve for this response and said that he wasn’t sure he approved of patients doing research.
“I told him I had no inclination to apologize for it. I said that I knew he was interested in my health, but not nearly as interested as I am.
“It’s his job, but it’s my life.”
Dr. Stuart Foxman of the College of Physicians and Surgeons of Ontario has written about doctors’ reaction to the growing phenomenon of patients who are self-educated “medical Googlers”. On his blog for physicians called DocTalk, he cited a survey of physicians that found many docs rate the know-it-all Googler as somewhere between “frustrating” and “irritating”.
This study noted a number of doctors’ concerns. Some patients used the information gleaned on their own for self-diagnosis or self-treatment. Some doctors believed that the information caused the patient unnecessary confusion and distress. Dr. Foxman explained:
“All of these seem like legitimate concerns on the part of physicians. The highly curious and informed patients were sometimes perceived as ‘challenging’ with a tendency to test the knowledge of physicians. Some doctors felt that these patients were overly assertive, undermined their authority, and did not show sufficient trust in their health care provider.”
Consider, for example, Dr. Scott Haig‘s classic TIME magazine essay called ‘When The Patient Is A Googler’ – a scathingly arrogant attack that describes his Googling patients as:
“. . . suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”
Just a tad oversensitive to having his authority undermined, wouldn’t you say?
The reality, of course, is that, despite doctors like Haig, patients are indeed consulting Dr. Google in growing numbers. According to the Pew Internet and American Life Project, 80% of us use the internet to “prepare for or recover from” our doctor visits.
Well-known physician blogger Dr. Kevin Pho believes that it’s time to stop debating whether or not patients should research their own symptoms. It’s happening already, as he warns:
“The medical profession would be better served to handle this new reality.”
My heart sister Laura Haywood-Cory survived a heart attack at the age of 40, caused by a deadly condition called Spontaneous Coronary Artery Dissection. She recently explained her own need to seek information and support online in her excellent essay on the Stanford School of Medicine blog, Scope:
“As a patient with a rare condition that most cardiologists have never encountered, I and others like me have had to become our own experts. And since our numbers are small, we aren’t able to gather for support in person; we do it online.
It seems to me that the answer isn’t to discourage people from seeking medical information from Dr. Google, but rather to teach people, starting in school, some critical thinking skills. How to sift the online wheat from the chaff and how to determine which sites have credible information, versus ones that are just selling the latest formula of snake oil.”
Dr. Michael Lowenstein, co-director of the California-based Waismann Institute, believes that the more educated patients are about their health, the better care they’ll get. He also says patients need to be their own advocates in today’s health care environment. For example:
“There are patients who educate themselves and go to reputable websites that have good information. It makes for an intelligent dialogue between doctor and patient about the medical condition and treatment options.”
Since we know that many patients are already inclined to go online and search for information, physicians should look at this as an opportunity to enhance their own websites, warns Erin Sharaf of Northeastern University.
“It’s smart for medical practices to have a website and steer their patients to better resources. Refer them to other reputable external sites with links from your own website, so that patients know they are credible, respected and have accurate information.
“It’s also important to both stay up to date with the medical literature as well as the lay press so you know what your patients are reading.”
See also:
- Health Information Online: How to Tell the Trash From the Truth
- What Doctors Really Think About Women Who Are ‘Medical Googlers’
- Why You’ll Listen to Me – But Not to Your Doctor
- My Lowly Beginnings as an Empowered Patient
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Q: What are your favourite credible, reliable online resources for heart health information?
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Heart Sisters 
I have COPD, my doctor on telling him I suspect I may have Angina, sends me for a echo sonogram stress test, test incomplete, tech could not envision all of my heart due to lung being in the way. Next, sends me to Cardiology doctors to have a adenosine cardiolite stress test. Failed also, I became extremely short of breath during second step of test which was opening my arteries to view EKG readings. Test then stopped. Now they say the next test would be at the Hospital. Didn’t inform me of what this is. I suspect an Angiogram. I will refuse this, too high of a risk, when I probably don’t even have Angina.
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Dorothy, don’t ever show up for (or cancel!) any diagnostic test until you know exactly what it’s called and what it’s for. Call your doctor to find out, and then you can make an informed decision about your next step. It IS possible to have two conditions at the same time (COPD plus angina, for example). I’m not a physician so can’t comment on your case specifically, but I can tell you that generally many people live very well despite chronic angina episodes – thanks to treatments like nitroglycerin. Best of luck to you, whatever is causing your symptoms.
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This is my opinion. I don’t believe I should have had this adenosine rest/stress cardiolite procedure. If something is not broke, I do not believe it should be fixed. I think they could cause more harm than good.These tests are at risk for adverse reactions. Mine proved this fact. Adenosine exaserbates COPD and should not have been used. I did the research, sorry to say post test.
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That’s such an important lesson you’ve learned, Dorothy: to always do your homework BEFORE every new test, every prescription drug, every hospital procedure. It’s all part of informed decision-making. Best of luck to you…
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The reason I went through with the test was because my doctor said once, that if I didn’t follow her referrals she wouldn’t or couldn’t do anything for me. That statement came when I refused to submit to the mamogram every year, when it is recomended every two years?? So I was apprehensive to that fact and proceeded with the test even though I did know it could have adverse results, including death. Yet most tests can cause death depending on the bodies reactions, and the type of testing, not to leave out the expertise of the technician. I really have this notion that older people aren’t considered significant beings.
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An informative blog, as always, Carolyn, And thanks for the link! I’m grateful to have a cardiologist who works with me, who isn’t threatened by me looking up stuff online about my condition. I wonder how much of that is a generational thing; my doc is fairly new, and young.
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When it comes to your diagnosis (Spontaneous Coronary Artery Dissection), I’d like to believe that YOU are a valuable resource for any new, young cardiologist who has likely encountered few if any survivors like you, Laura!
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Yes Laura, I seem to want to agree with you on the age of your doctor, mine told me she was eighty two or three years ago. She has a lot more experience, yet a younger doctor I would imagine has the latest information. All medical professionals have to keep up with the latest information that is always becoming better or in some cases worse.
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I think age is just a number, Dorothy. A doctor can be young and inept, and old and highly skilled and everything in between. In 2015 I had the honour of meeting a pioneer cardiologist at Mayo Clinic, Dr. Nanette Wenger. I’m not sure of her age, but she graduated from med school in 1958 – which is to say she is VERY experienced. And sharp as a whip – still teaching med students, researching and treating her very lucky heart patients.
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So, it is either, or. Seems fair enough. Depends on DX, whether right or wrong and so on and so on. It’s a no win situation, is what I see now.
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I’m a googler, too. I’ve read many articles on the doctor sites (Cardiobrief is one), about how the new a-fib drug Multaq is failing both in safety and efficacy. I’ve read on dr. blogs (admittedly less scientific and not peer reviewed) regarding doubts of safety and effectiveness of cryo catheters for pulmonary vein isolation to treat atrial fibrillation.
My cardiologist just suggested both. When I mentioned Multaq has been implicated in deaths from liver failure I got poo-pooed. WTH? My previous level of comfort with this man, due to a successful atrial flutter ablation, is now shaken to the core. At this point I just do not know how to proceed. It just annoys me no end to be poo-pooed.
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Hello Allison – you have a dilemma on your hands. But, as the heart patient quoted here on this post wisely wrote about her own cardiologist: “I knew he was interested in my health, but not nearly as interested as I am. It’s his job, but it’s my life.” Ultimately, this is, of course, your choice. But know that if you do not choose his recommendations, you will be, of course, labelled a “non-compliant” patient – which is just about the worse slur a doc can throw in our direction!
I like to refer Multaq queries to electrophysiologist Dr. John Mandrola, who has this to say about this drug manufactured by Sanofi Aventis: “I’ve said it before, but I guess it has to be said again: Multaq simply doesn’t work to control AF. Nearly everybody that isn’t paid by Sanofi admits this.”
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Here are some of the sites this information flâneuse checks:
– Cardiology News
– Seconds Count
– Cardiobrief
– Cardiology Today
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Thanks so much, my flâneuse-sister Lora – my favourite on that list is Larry Husten’s blog Cardiobrief on Forbes.
PS: dear Readers, not sure what an information flâneuse is?
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Mine was a gastroenterologist. Took downloaded articles from a national gastro newsletter to appointment. He wasn’t impressed, despite my showing him the source. He said: “I only read from my trusted sources”.
Said my gastro pain, that with some regularity masks as heart pain, could be helped with antibiotics followed by an antidepressant.
I reminded him I am a heart patient and was concerned about side effects. Not to worry!
Went to pick up at the pharmacy.The pharmacist told me side effects can cause heart irregularities and high blood pressure and that I should contact my cardiologist.
Needless to say, the meds stayed at the pharmacy and the gastroenterologist is no longer my provider.
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Wow! Thank goodness for your pharmacist, Leslea – and a wise reminder here about what a useful and under-appreciated professional resource pharmacists can be, especially for those of us taking a fistful of meds every day.
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I’m 45 and have been experiencing chest pain and other symptoms for some time now. I recently visited a fairly young (late 40’s) experienced cardiologist.
I went to the appointment very prepared (having done my research) because I knew based on my age and otherwise good health I was likely to be dismissed.
While he took the time to make sure I was well aware of how many studies he could quote from memory, he failed to truly listen to me. When I told him about “Heart Sisters” and how valuable I found it, reading countless stories that I could relate to, his response was, “I take sites like that with a grain of salt, the problem is women like to talk about how they feel but don’t actually explain their symptoms”.
I was speechless but only momentarily. I pushed back and told him in fact the stories are filled with descriptions of symptoms which in most if not all cases led to a diagnosed heart condition. He gave no acknowledgment and moved on.
Bottom line, he told me he didn’t know what was wrong with me but it wasn’t my heart. When I continued to push back, he talked about a test that is now available and better than a nuclear stress test BUT because I’ve already had the stress test he didn’t recommend it because the test involved a nuclear component as well. When I asked him what would be an appropriate time period to wait to safely take the newer and better test he responded by cautioning me that there is a link between nuclear tests and breast cancer as well as dementia. While there may be some truth to this, I’m all for informed decision-making.
I went to explore my heart health and left feeling like I would put myself at risk for breast cancer if I were to take any further exploratory steps. Not a pleasant experience!
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Your doctor just might end up featured in a future edition of my post Stupid Things Doctors Say To Heart Patients.
Trouble is, your doc knows nothing of sites like mine and is uninterested in learning more because he already knows everything he needs to know about everything. You might forward him this (all-symptoms!) post called How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories.
Your story, Terri, is every patient’s worst nightmare. How is a woman supposed to proceed in the face of such dismissive and distressing responses from the very person she turns to for expert help when sick, desperate and worried? Right now, you just don’t know if your symptoms are heart-related or not, but something is causing them and you have the right to learn what that is. Good luck to you – please keep us posted.
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Such arrogant, dismissive responses on the part of these doctors. You would actually think that they believe the only people who are capable of doing critical thinking in this world have, at the very least, an M.D. after their name!
I’m eagerly anticipating your column, Carolyn. Makes me think of my first cardiologist, who despite my increasingly worsening nuclear scans post by-pass, continued to only discuss losing weight. Never did a Berkley Lipid Test, never tried other statins, but when it was finally determined I’d lost my bypass graft after about 20 months, he decided we should be a bit more aggressive! I was so angry that I had to actually lose my graft and NOW be compromised (as I wasn’t before) in order for him to look beyond my weight!
That’s when I changed cardiologists, and at my first visit with the new one, I made it clear that I was interviewing HIM because I wanted a provider who would LISTEN as well as TALK to me! He has turned out to be a ‘gem’ and I have not regretted for one minute questioning the first doc’s quality of care!
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Your first cardiologist’s insistence on a (wrong) diagnosis is a great example of the “thinking error” that cognitive scientists call Confirmation Bias: “looking for evidence to support a pre-conceived opinion, rather than looking for information to prove oneself wrong”. Trouble is, for far too long, patients have felt far too intimidated to even dream of upsetting/questioning people with the letters M.D. after their names . . .
Thanks, Lynn.
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