A dermatologist take on the Facebook Kawasaki diagnosis story

The Facebook Kawasaki diagnosis story is a wonderful one. In case you’ve not heard, a 4-year-old boy with a fever and facial swelling was misdiagnosed by his pediatrician. When his mother went to Facebook to share photos of the poor, pumpkin-headed child, three of the mom’s Facebook friends told her that he had Kawasaki disease. They implored her to take him to the ER. She acquiesced and took her son to the hospital where he was admitted for Kawasaki disease, just as they had predicted.

It’s a great human interest story, but also a great example of the value of teams. Drs. Atul Gawande, Peter Provonost and others have been preaching about the power of teams for years. In most instances, they assert, a good team is better than one brilliant doctor. The principle that teams outperform even great talent is vogue in business as well as medicine; it’s even been a hot topic over at The Harvard Business Review.

In this case the team was crowd-sourced. That is, a group of (mostly) lay Facebook users came up with the correct diagnosis even though the physician treating the child had not. This is what the empowered patient movement have been saying all along: “We’re critical members of the healthcare team, not just recipients of care.” And they are.

As a dermatologist, I don’t expect my patients to post photos of their rashes to Facebook for a second opinion, but I do value their and their families’ input about the diagnosis and best treatment. Many times, they are right. “Listen to the patient,” said Osler, “he is telling you the diagnosis.” While Osler couldn’t have imagined patients reading his textbook, today’s patients have easy access to all types of medical information. If Osler were on Twitter today we might MT (modify truism): “Great doctors are great team members, and the patient is part of that team.”

A twist to this story is that one of the Facebook friends, who posited the correct diagnosis, happened to be a pediatric cardiologist. Because Kawasaki disease can lead to coronary artery aneurysms, she was familiar with the disease and treatment. However, by advising the mother to take the child to the hospital right away, this physician gave medical advice to someone who wasn’t her patient. She did so using social media.

Treating someone with whom you do not have a doctor-patient relationship is a violation of medical ethics. This clearly defined relationship protects the patient and the physician: both understand the expectations and responsibilities. In this instance, the outcome justified the physician’s action — failure to treat this child could have been catastrophic. But is this teleological argument the right one? That is, can we say that the ends always justify the means when physicians practice medicine using social media? What if the patient did not have Kawasaki’s disease, yet the mother took him to the ER anyway, costing her lost time, wages and debilitating medical bills? Would the Facebook physician still be justified? Would the physician be accountable? How will we decide what is right and wrong in this wonderful, strange new world?

Jeff Benabio is a dermatologist at Kaiser Permanente in San Diego. He blogs at The Derm Blog and can be found @Dermdoc on Twitter.

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  • http://www.facebook.com/profile.php?id=1052074130 Kevin Windisch

    telling somebody to see a physician for a life threatening condition is not the practice of medicine, only telling a parent to take medication would constitute the practice of medicine.  telling them to be seen by a physician is not a violation of any ethical standard.  Failure to warn the mother that her child’s life was in danger would have been a breech of any ethical standard known as well as a breech of any moral standard ever known.

    kevin m windisch md faap

    • http://www.facebook.com/dr.benabio Jeffrey Benabio

      So if the cardiologist failed to warn the mother (because of a failure to diagnose or failure to get involved), would she be liable? Would she have breached ethical or moral standards?

      • http://www.facebook.com/people/Julie-Davis-Hine/1412202105 Julie Davis Hine

        Ultimately the decison to seek care on behalf of a minor child belongs to the parent.  As parents who rear children with chronic conditions know all too well, many times they know more than the fresh faced HO1 they first see even in the best ER. But parents come in all varieties, just as do MDs. We need to raise children to expect to actively participate in their own care at every level- at every visit.
         Gone are the days when communication and understanding are optional.  It is not limited to children- I am currently fighting for a client whose Primary Care Physician never told him he had COPD. He thought he had chronic bronchitis. Coded in his chart under both 9 and 10 designations, but never explained. Never treated. No spirometry. Now he has lost his medicare supplement. The primary said- “everyone who ever smoked should know they have COPD”  Speechless.

  • John Schumann

    Good post on crowdsourcing and some of the inherent risks and ethical issues. KevinMD had a similar such story last year that helped diagnose a fever of unknown origin in real time. The story got picked up by a national news source:

    http://glasshospital.com/2010/09/12/glasshospital-goes-bigtime/

    -Dr. John

  • Anonymous

    I disagree that telling someone to seek medical care and suggesting the
    venue (in this case, the ER, immediately) is medical care, AT ALL.  In
    fact, it is the opposite.  It is suggesting that they GET medical care. 
    If we are now prohibited from telling people to seek care, it is a
    problem.  What if I see someone in line at the grocery store with an
    obvious melanoma on their arm? Does it not behoove me to say, “You might want to get that checked by a dermatologist as soon as possible. I’m not a dermatologist, but I think he might want to look at
    that.”?

    I don’t think this really has to do with social media,
    but with consideration of a fellow human beings.  When random people on
    social media ask for my assistance with medical care, since I cannot
    provide medical care, I refer them to their own doctor for evaluation.  I
    think this is the right thing to do and is not at all in deviation from
    what I already do IRL.

    • http://www.facebook.com/dr.benabio Jeffrey Benabio

      Yes, “Go see a doctor” is more common sense than medical advice. Broaden the discussion, though. What if the cardiologist advised to not go to the ER? Is it still not medical advice? What if the child didn’t have Kawasaki and the ER bills were prohibitive?

      Social media are tools that enable us to do what we do as human beings; connect, share, and in this case act with consideration for another human being. The difference is that social media allow us to do these things on a different scale which why it’s important to discuss medicine in this context. 

      • Anonymous

        Just as doctors are not forced to stop and aid someone in a car wreck, they do so because they are good human beings and want to help.  Since the person and the doctor have no legal or medical relationship, the doctor has no obligation to help.  Though most would, because they can. 

  • amcunningham

    A UK Perspective:
    General Medical Council guidance states: “In an emergency, wherever it arises, you must offer assistance, taking
    account of your own safety, your competence, and the availability of
    other options for care. ” http://www.gmc-uk.org/guidance/good_medical_practice/good_clinical_care_treatments.aspSo does ‘wherever it arises’ also include responding to an emergency one comes across online? Surely it does. Was
    the cardiologist who urged a mother to take her child to an emergency
    unit because of suspected Kawasaki responding to an emergency? http://www.kevinmd.com/blog/2011/07/dermatologist-facebook-kawasaki-diagnosis-story.htmlSurely he was. So was this the right thing to do? Yes.

  • Anonymous

    Your point is well taken- we haven’t considered yet the implications of social media in these circumstances. What if the pediatric cardiologist did not recognize the symptoms and concurred with the primary pediatrician? Although advising a patient to seek further care is not considered medical treatment, diagnosing a medical condition is.

  • http://twitter.com/CristerDelacruz CristerDelacruz

    What’s the difference between that person being a pediatric cardiologist and say, an architect?  She did NOT treat the patient, she simply gave her opinion and advice to the mother to take the child to the hospital. That is not “treating”… that is someone (regardless of profession) advising her friend to take her sick child to the hospital.

    If I was to see a friend’s roof almost collapsing and they asked what I thought, I’d tell them to call a roofer or a construction expert… that is not me trying to FIX the issue, that’s me giving advice. 

    • http://www.facebook.com/dr.benabio Jeffrey Benabio

      Good points, Crister. 

      In medicine, giving advice is treating. The relationship between patients and doctors is not the same as between mechanics, roofers or architects and consumers. 

      If the pediatric cardiologist saw the photos and advised the mother to not go to the hospital (because the cardiologist mistakenly thought it was a benign rash), then what? The advice in that case could have led to serious complications or death.

      I’m not suggesting that the cardiologist did wrong, but rather opening the discussion as to what the safeguards are for medicine and social media. 

      • http://www.facebook.com/people/Julie-Davis-Hine/1412202105 Julie Davis Hine

        The safeguards are the same as they used to be for medicine and relatives, medicine and neighbors, medicine and your college roomate who now is an RN, medicine and the community in person.   
        If the patient has a stong and trusting relationship with the provider, they feel comfortable questioning differential diagnosis or proposed courses of treatment.  My pediatrician calls me on my cell if I go to the ER with one of my kids- she wants to be called on her personal cell whenever they have a problem.  When my son was hit by a pitch- she had the digital images sent to her office and viewed them during her lunch break.You have to project that you care.  You can’t leave the parent feeling as though you are worrying needlessly, or that they are bothering you for no reason and then expect full compliance with “wait and see”.The MD owes the patient an apology and either a renewed relationship or the Mom needs a new pediatrician. Period.

  • Anonymous

    The facebook Kawasaki story is really not that great of a story – Mom takes kid to doctor with a fever, which is worked up for strep and started on antibiotics, fever persists, mom posts to facebook instead of returning to said doctor and gets reactionary response from crowd to run to nearest ED lest kid has some life threatening disease (which by coincidence, he did have).  Mom makes national news for support facebook provided when healthcare failed.  
    Except this kid was diagnosed with Kawasaki disease on day 3-4 of his fever, which is not the diagnostic criteria of 5 days of fever.  True he had enough of the other stigmata that he clearly had the disease at day 4 and was appropriately admitted for treatment.  But this was not a missed diagnosis, this was a mom who didn’t give her pediatrician the chance to make the diagnosis and the crowd sourcing that created a chasm of distrust between the provider and patient on this endless path of chiming in, and probably in most cases, creating unnecessary panic.

  • http://www.howtobesick.com Toni Bernhard

    I agree with others who’ve left comments here: Telling someone to seek medical care and even suggesting a venue (here, the ER) is not providing medical care or practicing medicine.

    I’ve written a book on living well with chronic illness and have a Facebook page for it with a good following (over 5,000 members). I’m not an M.D. — just a retired law professor with a chronic illness. I am careful never to give an opinion on what a person might have or to recommend any treatment. But I do often tell people to see a doctor or other health professional when they post about their symptoms. I’ve never considered that to be practicing medicine. If anyone here thinks it otherwise, I welcome their input!

    Toni Bernhard
    http://www.howtobesick.com 

  • http://pulse.yahoo.com/_N2IFAXPL57KUSINCL3OLRCLHSU GL

    Telling someone to see a doctor or to go an emergency room because their symptoms COULD be a serious disease is not treating a patient.  Recently my husband had some symptoms and I was debating whether to take him to the emergency room right then, or wait until morning and see his doctor. I checked his symptoms on WebMD’s symptom checker and it said to go to the emergency room, so we did.  Are the doctors who wrote the symptom checker guilty of violating medical ethics by treating a patient they haven’t seen?  I think not, and evidently WebMD’s legal team thinks not.

    Sometimes patients who have a disease are more familiar with it than a doctor, who needs to know a bit about hundreds of diseases, but who make not recognize uncommon ones.  My doctors were baffled and unable to diagnose a disease I had. I talked to a friend about my symptoms and she recognized them right away, because she had the same disease. I told my doctor what my friend had said, and it turned out she was right.  My friend wasn’t practicing medicine, she was making a suggestion to my doctor (via me), based on her experience.

    If this woman’s cardiologist friend had urged her to ask her pediatrician about Kawasaki disease, the pediatrician probably would have made the diagnosis. But because Kawasaki disease is a medical emergency, had the cardiologist NOT urged the mother to take her child to the ER, she would have been guilty of violating medical ethics.

    I agree with you that doctors need to listen to their patients. We live with our bodies and we often sense when something isn’t right. Doctors need to trust their patients and much as they ask us patients to trust them.

  • http://twitter.com/Skepticscalpel Skeptical Scalpel

    Perhaps all of you missed this story from October of 2010.
    (http://is.gd/wL5bwH) A nurse saw a Facebook photo of a child whose left
    eye showed white on her retina instead of the usual “red eye.” The
    nurse correctly diagnosed a retinoblastoma and contacted the child’s
    mother, advising her to take the girl to a doctor. Although the child’s
    lost sight in her left eye, her life was saved. I don’t think the nurse “treated” this
    child. Do you still think it
    was wrong to have intervened?

  • http://pulse.yahoo.com/_Z56SRJVMFZCAREF4T62L7VJAHA Anonymousse

    “Go to the ER” is not treatment not a diagnosis.  It’s saying go get a diagnosis and treatment.
    So it’s okay for a non-doctor who doesn’t really know to say “Go to the ER” but it’s not okay for a doctor who does have the skills to judge to say “Go to the ER”?

    Lost wages, time, and debilitating medical bills?  The woman was posting on FaceBook at home with her sick child.  That’s how she was able to take photos….  When your child is sick you have to stay home and tend to him whether or not you take him to the ER.  Most employers give paid sick days.  If the kid ended up not really that sick, the ER bill would not be debilitating.

    In this case, it was an emergency.  Knowledgeable people knew with high enough degree of certainty to say that it was an emergency.

    If you saw an old man keel over in a store and complain of chest pain, would you think, he’s not my patient?  If you saw him on the store’s video camera display, would that be different?

    There’s nothing inherently new about social media except the speed with which and number of people who saw her child.  Before social media, she would have described what he looked like to her friends and relatives over the phone, or people who dropped by the house, who would for the most part be the same people including the friend and cousin who are doctors who she now connects with on social media.

    Every day, I come across pseudoscience books written by doctors bypassing science journals and peer review, who dish out actual specific medical advice to people they don’t even have a communication channel with.  Let’s focus our medical ethics attention on the actual crap.

    Doctors are the only professionals I know who don’t work in teams.  I do not know why this is, but maybe if they did and caught up with modern organizational practices and communications tools, patients could “crowd-source” to actual doctors where there is a doctor-patient relationship instead of their lay friends on FaceBook.

  • http://twitter.com/tpetrusick thomas petrusick

    I am a little disturbed because the nameless Ped is presented in a bad way.  How much time passed between the visit and facebook photo.  Very few of these patients are diagnosed first visit it usually is a second or third encounter.
    The correct advice would have been to go back my child is still sick or getting sicker.  Call your Ped back!

    • http://www.facebook.com/dr.benabio Jeffrey Benabio

      Kawasaki disease is difficult to diagnose. I don’t think the story portrayed the pediatrician as failing so much as the power of Facebook and a social network to help this family. 

  • Angela Speziale

    Happily the outcome was a good one.  I want to recommend ClickCare mobile health where physicians can share
    text, photos and video with other physicians, patients and family members. It provides collaboration as easily as
    Facebook but in a HIPAA compliant environment between physicians and patients.

  • Anonymous

    The mere fact that the mother posted the pictures indicates that she was not entirely comfortable with the first opinion. She sought a second opinion, indirectly, through Facebook.

    Many of my FB friends will post when they are not feeling well, either physically or mentally. Several folks will comment with either advice or support. This is no different then if we were sitting face to face over coffee. There have been more lives helped and saved from social media then any of us know.

    May the good doctor who urged medical treatment continue to practice compassion and empathy and ignore laws contrived to protect doctor’s income.