Dr. Google in the E.R.

25 Nov

 by Carolyn Thomas  @HeartSisters    November 25, 2018

Once upon a time, whenever the good citizens of Belgium experienced puzzling symptoms (let’s say, “twitching eyelids”), they would turn to Dr. Google to find out what might be causing the symptoms. But the Belgian government, concerned about false and scary health information online, came up with a public awareness campaign that warned: “Don’t Google It. Check a reliable source!” This also included a referral link to a government health site that could help to correctly answer questions about twitching eyelids and several other health issues.

This campaign was what patient activist Dave de Bronkart (aka ePatient Dave) bluntly described at the time as spectacularly wrong, insulting, misinformed and wrong-headed.

But many physicians were genuinely concerned that patients could become confused by the incorrect or poorly explained health information they learn online, or that this confusing information might undermine the doctor-patient relationship if their patients follow Dr. Google’s advice instead of that offered by trained medical professionals. You can see for yourself how the lives of Belgian patients were ruined because they searched online, according to this 1-minute “Don’t Google It” TV ad:

The main issue in this dreadful campaign, as I saw it, was not just the implicit assumption that all patients in Belgium are stupid, but worse, it was the utter failure of Belgian bureaucrats to acknowledge that people are ALREADY online! You simply cannot un-ring that bell. . .

Like me, many Belgians are busy Googling all kinds of things, every day, day in and day out.

Personally, I wouldn’t even buy a toaster without checking with Google first to learn as much as I could about useful things like reliability, product features or where to get the best value. And if my first stop is an online search for relatively minor things like toasters, you can be absolutely sure that I’m going to ask Dr. Google about truly important things like troubling symptoms.

And I’m not alone. It turns out that many physicians like to visit Wikipedia when they need information quickly. According to the IMS report called Engaging Patients Through Social Media,

“Wikipedia is the leading single source of healthcare information for patients and healthcare professionals…[and] nearly 50% of U.S. physicians who go online for professional purposes use Wikipedia for information, especially on specific conditions.”

Meanwhile, recent research suggests that consulting Dr. Google about one’s health concerns is not only a pervasively common practice, but may actually have “a positive impact on the doctor-patient relationship.” 

An Australian study, for example, found that over one-third of adult patients searched the internet for information on their health problem at some point before coming to the Emergency department (that statistic increases to 60% in 18-29 year olds). Both of those stats, by the way, seem shockingly low to me.

Of those who did seek Dr. Google’s opinion(1):

  • 62% searched more than 24 hours before showing up in Emergency
  • about 20% did so during the 1 to 24-hour period before arriving
  • 12% Googled while already sitting in the Emergency department waiting to be seen
  • most people did multiple searches (68% asked about symptoms, 51% about treatments, 41% diagnosis, and 23% choice of health centre)\

These queries make perfect sense. Wouldn’t you want to know all you could learn if you were wondering what the heck was going on in your own body? And this is critically important if you or a family member live with a rare disease diagnosis.

But researchers wondered if seeking these medical answers online would ultimately improve or detract from real life medical care. Dr. Anthony Cocco and his team concluded:

“Searching had a positive impact on the doctor–patient interaction in most cases, and was unlikely to cause patients to question the diagnosis or advice of their treating doctor. Online health information was unlikely to cause patients to doubt the diagnosis by a practitioner or to affect adherence to treatment. ”

He added that the majority of patients said their online searches had helped them to answer a doctor’s questions, and over 90% did not change any of their treatment plans because of conflicting online information they had found.

The researchers recommended that “doctors should acknowledge and be prepared to discuss these online searches for health information with adult emergency department patients.”

Outside of the Emergency medicine setting, other researchers in 2017 warned:(2)

“As patients have better access to health information through the internet and expect to be more engaged in health decision-making, traditional models of the patient-provider relationship and communication strategies must be revisited to adapt to this changing demographic.”

The 2017 study explained that physicians currently tend to respond to their patients’ search for internet-derived health information in one of three ways:

  • by reacting defensively and asserting their expert opinion
  • by collaborating with the patient to analyze the information
  • by guiding the patient to reliable health information websites

That last bullet point is the one I like to mention whenever I speak to an audience of physicians.

“Guide the patient to reliable health information websites.”

Doctors, you know that your patients are already online, so please do not tell them NOT to go there. 

Instead, create a prescription pad-like list of credible, jargon-free websites/books with basic health information that you would feel comfortable recommending. Share this list of approved resources with your patients.* For example, Mayo Clinic and Up-To-Date and the Heart and Stroke Foundation are some good sites to start with for heart patients. Even a person who is not experienced in internet searching can quickly learn how to bookmark and navigate these patient-friendly sites.

Stress to your patients that they must become savvy consumers when it comes to online health information, and must learn the difference between truth and trash out there.

And most importantly, please don’t abdicate your traditional role as educator. If you do that, if you don’t steer your patients to curated resources that could add to accurately informed discussions about their health, then the Gwynneth Paltrows of the world will take over that job for you.

Sadly, some of the poorest-quality medical resources are run by those with the letters MD after their names (Dr. Oz and his embarrassingly cringe-worthy “miracle fat-busting cures” come to mind here). In fact, when a study published in the British Medical Journal (BMJ) evaluated how reliable this celebrity doc’s medical opinions were, scientists concluded:(3) 

“Approximately half of the recommendations have either NO EVIDENCE or are contradicted by the best available evidence.”

(Oz fans, remember that fact when confronted with his preposterous clickbait TV headlines like: “Seven Libido-Boosting Super Foods That Can Save Your Marriage!”)

What I now recommend to my Heart Sisters blog readers, to the women in my Heart-Smart Women audiences and especially to all those who are living with heart disease, is that their only job is to become the world expert in their own medical diagnoses. As one of my readers said to her cardiologist:

“This is your career, but it’s my life.”

If only the Emergency physician who misdiagnosed me with acid reflux in mid-heart attack had decided to to do a Google search before sending me home. . .

There’s likely only one possible correct diagnosis that he and Dr. Google would have come up with together if the words central chest pain, nausea, sweating, pain radiating down the left arm had been typed into a Google search – and it ain’t acid reflux.

1. Anthony M Cocco et al. “Dr Google in the ED: searching for online health information by adult emergency department patients.” Med J Aust 2018; 209 (8): 342-347.
2. Tan SSL et al, “Internet health information seeking and the patient-physician relationship: a systematic review.” J Med Internet Res 2017; 19: e9.
3. Christina Korownyk et al. Televised medical talk shows—what they recommend and the evidence to support their recommendations: a prospective observational study.”

* In my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017), I included two full pages listing helpful books and websites of interest to heart patients (under Recommended Resources). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use the code HTWN to save 20% off the list price when you order).

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Q:  Have you Googled your own symptoms before deciding what to do?

See also:

 

28 Responses to “Dr. Google in the E.R.”

  1. GGN December 6, 2018 at 1:41 pm #

    I’m with you Carolyn. It’s 2018. Like you, there’s no way I’d buy a toaster or anything these days without Googling all kinds of consumer reports first to get a range of opinions that help me make an informed decision. But I don’t search sites that belong to the manufacturer of the toasters, ya gotta learn which info is biased out there and what is credible.

    My medical health is far more important than my toaster is..

    Liked by 1 person

    • Carolyn Thomas December 6, 2018 at 2:06 pm #

      Good point about checking WHO is running the website you’ve landed on! Scroll down to the fine print in the ABOUT section; that’s how I’ve often discovered (in teeny tiny font) the names of drug or medical device companies that are trying to convince vulnerable patients to volunteer their contact info for what’s called “permission-based e-mail marketing”. This happens when companies get permission (via the subscription application you send back, for example) to get in touch directly with their customers. See also:”Why Big Pharma Wants Your E-Mail Address“.

      Like

  2. ePatientDave November 29, 2018 at 1:01 pm #

    Although Rheumatology News eventually deleted the offending post (see below – after refusing to, for more than a year!), Pat Salber at The Doctor Weighs In captured much of the text.

    Liked by 1 person

    • Carolyn Thomas November 29, 2018 at 2:31 pm #

      The title of Dr. Salber’s post pretty well sums this up: “The Rheumatologist’s Rant – A Most Obnoxious Doctor”.

      Q: why on earth would Rheumatology News refuse to delete something that Dr. S calls “one of the more offensive pieces that I have ever seen written by a physician”?

      Like

  3. ePatientDave November 29, 2018 at 12:54 pm #

    Vaguely related, on the subject of arrogant docs: Kelly Young’s post about the doc who blogged Kiss my ***” [literally the title of his post] about a patient who was so whiny about unsuccessful past treatment that he billed the guy for a Level 5 visit, just out of spite. (Yes, openly blogged about Medicare billing fraud.)

    The blog post is no longer live, but we can tell something from his consumer ratings: 3.2 of 5 stars on vitals.com, 2.4 of 5 stars on HealthGrades.

    Liked by 1 person

    • Carolyn Thomas November 29, 2018 at 2:24 pm #

      Oh, sheeeesh…. Kelly’s appropriate message to Dr. Larry Greenbaum (the physician who wrote that disgusting blog post) made a good point: “If it is so annoying to hear about a man’s circumstance living with Rheumatoid Disease, imagine how terrible it must be to actually live with it in your body 24 hours a day, 365 days a year.”

      I’m not an American, but I thought Medicare billing fraud was a punishable offense under U.S. law…

      Like

      • epatientdave November 29, 2018 at 2:26 pm #

        Right, but try to get it enforced.

        Liked by 1 person

  4. peggyrcc November 28, 2018 at 4:32 pm #

    If my doctor had recognized that generally healthy women who are running a business and raising a family don’t walk randomly into the ER because ANOTHER DOCTOR sent them there with a confirmed finding of a 6.6 hemoglobin–half the norm. Admitted to the hospital, given an endoscopy and colonoscopy, and told I had a “tiny, scabbed-over stomach ulcer”, given lots of iron pills, and pats on the head, told to eat well, etc. Eight months later after numerous blood tests, small bowel studies, endoscopies and losing 15 lbs while eating well, the doctor decided to get a family history. Revealing that my father had been an alcoholic, I was suddenly sent to get a liver biopsy to ‘confirm the patient’s cirrhosis. An ultrasound done in preparation for that focused urgently on my right kidney…10 cm tumor–size of a softball. Not quite a ‘tiny ulcer’.

    The pathology report written a day after my first (of three) endoscopies showed ‘No frank ulcer, no H. pylori”. Had the doctor read it? Had he ignored it? Had he decided that his judgment was better than the photos and tissue given to the pathologists? Was he so committed to his/my ulcer that he could not review my case objectively? Did he finally seize on the liver issue because I was so sick that my liver was failing?

    Every patient should be given every record, every test, every imaging report immediately upon it being available. Many patients are told not to call to get results, “We’ll call you if there is a problem.” Some patients finally ask for their records and find that the mass in their kidney or liver was visible years earlier, but the referring doctor “didn’t think that was possible…the patient is too young, of the wrong gender, or couldn’t possibly have that!”

    Every patient needs every record in his or her possession. And per friend e-patient Dave, ‘Nothing about me without me/give me my Data About Me …DAM records.” Be ready to ask, and if Dr. Google and/or Wikipedia can help you develop your vocabulary and your questions, celebrate! If your doctor is offended, leave him alone…sitting in his office without you.

    Liked by 2 people

    • Carolyn Thomas November 28, 2018 at 5:26 pm #

      Tell it like it is, Peggy! Sheeesh, and some doctors wonder why their patients are going online for information… You are like the poster child for those whose diagnoses have been delayed or just plain wrong… Hope you’re doing much better these days…

      Like

      • peggyrcc November 28, 2018 at 5:47 pm #

        Thanks, Carolyn, and I am doing wonderfully well. I was found to have Stage IV kidney cancer, with 100s of mets to the lungs, and oddly enough, did not trust my ‘specialist’ to recommend another specialist. (Besides, he called me late that fateful evening, and somehow forgot to mention that not only did I have a huge tumor on my kidney, but that the lower lungs were full of tiny mets.

        But growing up in western North Dakota, I knew that when you got in trouble, you went to the Mayo Clinic. Within four days, I was sitting with Dr. Brad Leibovich, who felt the tumor, and exclaimed, “Didn’t he feel this thing?!” And Dr. Leibovich had to tell me that my lungs were full of tiny mets, that my disease was certainly metastatic, and that he had a plan. That ‘plan’ was to get surgery, heal up and start in an immuntherapy program, high dose interleukin. It would require four sets of 5 day hospital stays, but it gave me a chance to slow, stop or perhaps cure the cancer.

        I came back to LA, and worked then with Dr. Robert Figlin, and within a few weeks, it was apparent that my treatment was working. About 10 weeks later, more shrinkage, and five months after the last dose of the medication, I was pronounced cured. No meds in those previous five months, not since then, yet my body continued to clear the metstases.

        This is the miracle of good care, given promptly, and a huge dose of luck that my version of clear cell kidney cancer and I were responders to the meds.

        PS. That was 14 years ago. The experience turned me into a patient advocate, and determined to help others who might also have any benefit from this or other drugs. It is still the only one to provide truly durable cures…but we kidney cancer patients will take any positive response, and support the researchers who have changed our world.

        Now if we could only get the BASICS to all the doctors who encounter kidney cancer patients! Ain’t easy, folks.

        Liked by 1 person

  5. helenakinc November 27, 2018 at 11:02 am #

    I am very wary of doctors whose egos are so fragile that they cannot tolerate questions, informed patients, or people who don’t treat them with the adulation they expect.

    I’m sure they were eloquent in the expression of their desire to serve humanity, eradicate disease, etc. when applying to medical school, but it seems that changes. Time is of the essence, whether in the ER, a regular appt., a phone conversation, whatever. The degree to which a patient is informed can significantly increase the likelihood of getting to the bottom of the problem in a time-efficient way.

    The doctors who are the true problem-solvers welcome ideas and input from others. It kind of reminds me of professors in academia (where I’ve spent most of my adult life)…the professors who are truly the most brilliant and the most respected often do not use titles or lists of degrees after their names. They are the ones who ask questions, are secure enough to say “I don’t know” and welcome new ideas.

    I wish that spirit were more pervasive both in hospitals as well as in universities. There’s no time or place for giant egos in either area.

    Liked by 1 person

    • Carolyn Thomas November 27, 2018 at 1:34 pm #

      That’s an interesting observation, Helena, about brilliant professors. I’d guess that the same might also be true for physicians, nurses, teachers, and lumberjacks – the best folks are lifelong learners no matter how many decades of specialized experience they have. My favourite people in general are those who are naturally curious every day.

      I also suspect that this phenomenon of patients doing homework with Dr. Google is a relatively new concept for physicians to deal with. Many express concern over the time required out of an already overbooked day to have to explain why what was learned on Google may or may not be even remotely appropriate.

      That’s why I believe so strongly in the practical wisdom of every physician creating a curated list of credible resources to hand out to every patient: saves time and aggravation by ensuring that the patient will search first on those doctor-endorsed sites, instead of the all crazy woo-woo stuff out there that really will waste time debunking.

      Like

  6. ePatient Dave November 26, 2018 at 10:07 am #

    You rock, that’s all I can say. Among the best anywhere.

    A few additions on the Belgian story:

    1. They ran another one too, in the same campaign.

    2. They won an award for best campaign of the year.

    (I can’t help but think that this matches the Sugar Association winning the 1976 “Silver Anvil” PR award for its “Sugar is Safe” campaign for excellence in “the forging of public opinion.”)

    “Forging opinion,” in the way you use an anvil. Delightful.

    3. But they’re not the only ones – Carolyn, if you haven’t seen it yet, you’ll LOVE this commercial (no longer in use) from Clalit, Israel’s biggest HMO: “Search victim.” Guy gets wheeled into ER in high anxiety, wife says he swallowed “hundreds” of websites. Doctor yells “CLEAR!” and slams his laptop shut.

    (I added the subtitles with the help of Israeli friend Lior Levy.)

    I’ve found it’s useful, when talking with people who think anyone is infallible (or anyone should be ASSUMED to be right), to point to the 17 year problem – the paper that established how it takes 17 years for HALF (HALF!) of physicians to adopt new knowledge. (As your reader said, to them it’s their job, and they handle most patients just fine; to the patient it’s his/her life.)

    Here’s my post with the source for that … and check out the commenter who found a study on the HISTORY of that number – did you know that when the cure for scurvy was discovered (“eat citrus”), it took 264 years for the knowledge to spread throughout the whole British Empire??

    Like, SIX GENERATIONS of docs came and went before the word got out.

    Keep banging the drum!

    Liked by 1 person

    • Carolyn Thomas November 26, 2018 at 3:02 pm #

      Thanks, Dave! So much good content there! I sure *love* that Israeli campaign….

      Re the awards for “best” campaigns: during my 35+ year career in public relations, I worked closely with a number of big ad agencies over the years as part of a corporate marketing team. Winning awards seemed to be the underlying goal for any agency pitching us a new campaign, and the more edgy and ‘out there’ the pitch was, the more the ad execs’ believed in their chances of winning a major award at the end of the year (an honour decided upon by other self-congratulatory creative types – NOT the target market at which the ad was aimed).

      This helps to explain how many ads I’ve observed that made me wonder, “How did that EVER get approved by the client?”

      That scurvy story is insane!!

      Like

      • C. Grünloh, PhD November 27, 2018 at 12:53 pm #

        Such a great post – I totally agree with Dave: you rock!

        About the ad and the client, target group, award committee discussion: The target group to which the Belgian ad is speaking is surely the patient, but who is the client? Medical associations/doctors/government…? I can easily imagine that many of these stakeholders were indeed very pleased and amused by that. Reminds me of the despicable coffee mug, “Don’t confuse your google search with my medical degree”

        In my opinion, it is a classic case of assumptions about patients and their skills and capabilities that may just not be true (or as you put it: “patients are stupid”). This really annoys me! Feels like little appreciation for the heterogeneity of the group of patients and the complexity of their situation disguised as “concerns” for their wellbeing.

        Liked by 1 person

        • Carolyn Thomas November 27, 2018 at 1:49 pm #

          Ooooh, that coffee mug bugs me, too, Christiane! I once saw a specialist who had a similarly odd framed plaque in his waiting room: “Your Outcome Depends on Which One of Us Is The Doctor.” Really. Seriously. My favourite response to that kind of message came from Katherine Leon, who was misdiagnosed during a serious heart attack at age 38 caused by Spontaneous Coronary Artery Dissection, a cardiac condition that mostly affects young healthy women with few if any risk factors. She once wrote:

          “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.”

          Many thanks for your kind words. PS And big CONGRATULATIONS to you on your wonderful PhD completion! ♥

          Like

          • C Gruenloh November 27, 2018 at 10:07 pm #

            Wow…. that framed plaque is awful. How did that make you feel during the consult afterwards? Or did you leave?

            Thanks for your congratulations and for sharing Katherine’s quote; it is really spot on. I find this depressing considering that Jay Katz wrote about this already in 1984 (“The Silent World of Doctor and Patient”, Johns Hopkins University Press) – long before we had Google:

            “Meaningful decision making implies that both parties have the capacity to make choices. This notion is opposed by ancient medical beliefs that patients, by virtue of being ill, are more like children than adults and therefore their capacity for choice is fatally impaired.” (Katz 2002, p. 85ff)

            “If physicians were to pay greater attention to conversation – to patients’ capacities to reflect about choices – it could change their traditional attitudes towards patients capacities
            to make their own decision and, in turn, could radically transform the current state of physician-patient decision making.”
            (Katz 2002, p. 112)

            Liked by 1 person

            • Carolyn Thomas November 27, 2018 at 11:07 pm #

              That framed plaque was in the office of an orthopedic surgeon I’d been waiting anxiously to see; I was in pain and happy to be seeing such a very important man – so no, back then, I stayed politely quiet with the proper amount of deference!

              Thanks for that quote from Dr. Katz’s book (coincidentally, my own book was published last year by Johns Hopkins University Press too!). I just read the JHUP’s description of his book that examines “…the time-honored belief in the virtue of silent care and patient compliance.” Sounds like it’s still a timely read!

              You’re right, it is depressing…

              Like

  7. Juli Star-Alexander November 25, 2018 at 2:07 pm #

    Totally agree. My condition CADASIL is likely responsible for coronary microvessel disease, and is being studied now through NIH.

    If I didn’t research my rare condition, I would follow doctor instructions which would worsen it (like taking aspirin).

    Liked by 1 person

    • Carolyn Thomas November 25, 2018 at 2:27 pm #

      Hi Juli – as you know, the rare disease community truly represents the star witnesses in defense of online resources about their diagnoses. Countless patients (or family members of patients) have been able to figure out clues to medical mysteries thanks to what they found out – often through online illness-specific patient support forums. The Rare Disease Foundation, for example, offers a Peer 2 Peer Resource Network of free support both online or at regular meet ups. These resources include advice on both ‘what can help’ as well as ‘what can hurt!’ from the experts who know this condition through lived experience.

      Some conditions are so rarely encountered by our physicians that most can go through an entire medical career without ever meeting a patient with that particular diagnosis. And Google is the start of how most rare disease information and connection is found at a time when patients and families are most desperate to learn.

      Like

  8. Grammy's Pen November 25, 2018 at 11:35 am #

    Dear Carolyn, I almost jumped out of my chair when I read your teaser. It was precisely my own experience fifty years ago. I was sent home after having ALL of the symptoms of a heart attack. My pain and left arm numbness continued for another seven hours. I even went to work the next day before going to the doctor.

    What saved me was the fact that I was a nurse, and decided to check with my doctor because the symptoms were SO obvious. One look at my EKG and my heart attack was confirmed, and I was immediately referred to a cardiologist. Two days later the pain returned, and I subsequently had a CABG (three vessels).

    Thank you for highlighting the importance of being an informed patient by any means necessary, including Dr. Google.

    Lillian Rhoades, Author, When Youth Fades -Don’t Wither on the Vine How to Celebrate Life After 60

    Liked by 1 person

    • Carolyn Thomas November 25, 2018 at 1:51 pm #

      Thanks for sharing that story, Lillian. I was thinking as I was reading your words: “What if she hadn’t been a nurse? What if her doctor hadn’t taken her symptoms seriously?”

      Who knows if you would have even survived to read this blog post today?! It’s frightening to realize that women have had to fight to have cardiac symptoms taken seriously for FIFTY years (and more!)

      Dr. Google is simply our current resource for health info. When my kids were little, it was the tattered copy of Better Homes and Gardens Family Medical Guide on our bookshelf we’d reach for. Being an informed patient isn’t something new!

      Like

  9. Anne November 25, 2018 at 8:44 am #

    First heart attack came with zero risk or warning. Picked up 5 stents to two arteries two days after cross country track skiing at altitude…. in my sleep. Weirdly, one would expect that the heart attack would have occurred under physical loading.

    Three months later, started random profuse sweats, loss of dynamic balance at the gym, along with a 20 point pulse increase. I could point to my training records to show precisely the day that things changed. For six weeks, my medical “peeps” smirked and said menopause without answering why – three years into menopause – my body suddenly took on a new set of normals.

    Well, my training records came into play because I could and did prove something was amiss – and got my nuclear stress test. One stent was plugged and I picked up the sixth stent. Hmmm. It wasn’t estrogen … it was epinephrine that was causing the sweats… My heart was fighting to keep beating despite the lack of oxygen.

    Then along comes Labor Day Weekend where the parents come together with their uber hip adult children. The WSJ did an article about how social media was helping people with mystery medical conditions find their diagnosis. This article and the gals who championed the SCAD research project – the subject of the article – saved my life. The only reason I read the article was to learn more about social media to have a interesting dinner conversation. I was shocked to see my exact symptoms laid out in this article. After Labor Day, I connected with Dr. Sharonne Hayes at the Mayo Clinic who agreed to see me and to request my medical records be couriered to MN.

    Two weeks later, with my medical records sitting on the dining room table, I had another heart attack. Two more stents – this time to the third artery. More loss of heart tissue. A month later, I flew to Mayo and was entered into the SCAD research study. Dr. Hayes saved my life. My tenacity saved my life. And my cardiologists also saved my life with restoring blood flow. Unfortunately, my cardiologists somehow did not make the connection between my symptoms and SCAD. I am the one living with the results.

    Dr. Google all you want, but be organized and use what you read to compile questions for your medical visit. Remember they have spent years studying everything body so they are light years ahead of you. ASK them to explain why they are eliminating diagnoses. ASK them to prove their diagnosis.

    In your case, Carolyn, “You say it’s reflux” and I am asking why now and how do we prove it’s reflux and not a heart attack?”. Ask for a second opinion – you can do this even in the ED. “Ask for a specific test to be done – I would like an echo cardiogram to rule out the heart function”.

    This is damning because if the doctor says no, then demand that your questions and concern be added to the record along with the medical refusal for testing. The hardest – and most important part – is that you must remain calm and clear thinking. Otherwise you are hurting yourself.

    Liked by 1 person

    • Carolyn Thomas November 25, 2018 at 1:28 pm #

      Hello Anne – I loved reading this take on your own dramatic story: “Dr. Hayes saved my life. My tenacity saved my life.” Brilliant!

      Your last paragraph is so compelling, and as my scientist friends would call it in describing chemical reactions: “the rate-determining step”. In other words, we are at our most frightened and most vulnerable (and least “calm and clear thinking”) while in the throes of unfamiliar and distressing symptoms in an Emergency department. If we can’t manage to speak up for ourselves, any further diagnostic discussion is over. And researchers tell us that patients who are perceived by hospital staff as difficult experience poorer care leading to poorer outcomes compared to non-difficult patients, so there’s that hurdle for us to get past as well.

      In my case, once misdiagnosed, I felt so embarrassed about having wasted their very valuable time over nothing but a simple case of acid reflux that I could not muster up any ability to “demand” anything, never mind ask for a specific diagnostic test. I simply had no clue!

      In fact, to make a bad situation even worse, my one question to the physician was immediately followed up with a stern scolding by the nurse to “stop asking questions of the doctor. He is a very good doctor and does NOT like to be questioned!” Nobody had to tell me twice – I felt so humiliated that I could not get out of that Emergency department fast enough.

      I now warn women NOT to be like me: do what I say, not what I did – while at the same time 100% acknowledging how tough (even impossible?) it can be for many of us during such a surreal experience.

      Liked by 1 person

  10. storiesofourboys November 25, 2018 at 5:35 am #

    This is reassuring because I have read exhaustive amounts of information about my conditions online: medical journals, Mayo Clinic, HealthLine, etc. etc. I’ve definitely run into the defensive doctors as well as the cooperative ones. Unfortunately, I move so much as an Army wife, I never know which type I’m walking in to meet at each new duty station.

    Liked by 1 person

    • Carolyn Thomas November 25, 2018 at 6:47 am #

      Hello April – you bring up such an important point, especially for women like you who don’t have the luxury of seeing the same family doctor for decades, one person who knows you and your family and has built up a long trusting relationship. But having found credible resources online means that at least you know where to look to get your health issues answered, and even more importantly, how to help yourself tell the difference between something minor and something that may need attention.

      Like

  11. Maxine Charlesworth November 25, 2018 at 5:18 am #

    Thumbs up on this advice, Carolyn. Ignorance is not healthy. Being educated, even slightly through your own research from reputable sources, can target your questions to the doctor about your symptoms and in reporting of your symptoms.

    Liked by 1 person

    • Carolyn Thomas November 25, 2018 at 6:42 am #

      I agree, Maxine! Knowledge is power, and ignorance about what’s happening to our bodies simply keeps us powerless.

      Liked by 1 person

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