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The case of Justina Pelletier not only reveals a series of systemic biases within the medical profession, but also the burden on families to be “good” and “likeable” in moments of deep vulnerability. (flickr)

The highly publicized saga of the family whose hospital visit resulted in the lost custody of their daughter should concern anyone navigating the complexities of the health care system. It is also a lesson in the way in which unconscious biases can impact the decision-making process of health care professionals and produce terrifying results. This story struck a nerve on a professional and personal level.

The reported facts involve a teenaged girl who was under the care of a specialist at Tufts Medical Center for a metabolic disorder. The specialist referred her to a gastroenterologist at Children’s Hospital familiar with her medical challenges to investigate whether her latest symptoms could be attributed to problems beyond her disorder. At Children’s, however, a dizzying series of immediate reactions and decisions followed, with tragic consequences. The gastroenterologist did not get to see her, the parents were accused of causing their daughter’s medical symptoms, the hospital convinced the state’s child protection agency to take emergency custody, the girl was involuntarily confined for months in a locked psychiatric ward, and the family’s access for visitation was severely restricted. Nearly a year later, the matter is still under court jurisdiction.

At the heart of these tragic circumstances is a glimpse into how medical judgments can be based on minimal evidence and the exclusion of key information.

At the heart of these tragic circumstances is a glimpse into how medical judgments can be based on minimal evidence and the exclusion of key information. The case not only reveals a series of systemic biases within the medical profession, but also the burden on families to be “good” and “likeable” in moments of deep vulnerability.

I train professionals on the ways in which unconscious biases can affect their judgments, focusing on decades of research demonstrating how the brain reaches conclusions based on instantaneous impressions and reactions, outpacing our seemingly more rational conscious thought process. In that role, I describe studies demonstrating how doctors who rely on mental shortcuts that are based simply on past experiences can make flawed diagnoses. Additional research in the field of neuroscience reveals how egocentric biases — the overestimation of one’s own abilities — can impair judgment. These unconscious biases can have even greater negative consequences when those who best know the patients — their families and their own health care providers — are excluded from the decision-making process.

According to the press coverage, Dr. Korson at Tufts Medical Center acted on the knowledge that not every symptom a patient exhibits is related to an underlying diagnosis and sought the advice of another specialist familiar with his patient. At Children’s Hospital, the family was not permitted to see that specialist and Dr. Korson was reportedly excluded from any involvement in the subsequent decisions regarding his patient.

The decision to exclude doctors most familiar with the patient’s medical circumstances may demonstrate another unconscious bias at work: confirmatory bias. Make a judgment, and then exclude information contrary to that opinion so the decision is wholly grounded in selected facts that match one’s initial impression.

Navigating possible systemic errors in judgment is particularly terrifying when an illness presents an unusual cluster of symptoms and the potential diagnosis is a rare disorder. For parents, it feels like being trapped in a vortex of fear that is excruciating. Only the empathetic support of the medical team involved can provide a lifeline.

We have lived in that vortex, and we are lucky. Our medical team understood that the successful treatment of our son’s rare disorder involved the family in every respect. Our doctor saw parents as an integral part of the patient’s overall care and often a key component of the diagnostic puzzle.

Our doctor also happens to be Mark Korson, the same Tufts Medical Center physician who referred his patient to Children’s. Personally, the story struck a nerve because Dr. Korson saved our son’s life many years ago (ironically, when he was at Children’s, where the emergency room did everything right to hone in on a rare diagnosis). Over the years, we have experienced Dr. Korson’s special combination of expertise and compassion, and his respect for the family’s ability to be partners in managing medical issues.

The response to ‘difficult’ parents, however, requires reasoned judgment and collaboration, not dismissal of their concerns or, as in this case, more drastic reactions.

According to the reports, this story may have involved difficult family dynamics. There is no doubt that parents find it hard to be on their best behavior when facing a medical condition that is not commonly understood. Ask any parent of a hospitalized child about the frustrations of repeatedly explaining to doctors and nurses the unusual aspects of care required in treating a patient whose condition is unfamiliar. And parents can be downright impossible in the emergency room when medical professionals with limited knowledge of their child’s circumstances are slow to provide the medication that is required.

Can parents be emotional in these circumstances? You bet. And some may be far worse than others. The response to “difficult” parents, however, requires reasoned judgment and collaboration, not dismissal of their concerns or, as in this case, more drastic reactions.

The circumstances do not diminish Children’s standing as a world-class hospital, but it does serve as a cautionary tale.  TWEET  The hope now is that this sad situation can offer a teaching moment for the medical profession.

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Tags: Family

The views and opinions expressed in this piece are solely those of the writer and do not in any way reflect the views of WBUR management or its employees.

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  • eat_swim_read

    You are waaaay too easy on Boston Childrens. which essentially kidnapped a teen girl for a *year* in a mashup of egos, revenue-seeking and ineptitude. Adding in the notably inept MA DCF Dilberts just compounded things. A cynic might wonder if the doctors weren’t trying to shift liability to the hard-to-sue state agency in adding the clueless CPS folks to the mix.
    This is atrocious malpractice and should be called out. Excellent, my foot. Childrens has locked up kids before – it’s SOP when challenged. I would avoid the place to be safe.

    • Becky Rangel

      Agreed!!

    • StreyDawg

      Boston tried to return Justina to a protective environment last summer, but the father threatened legal action against everyone so they wisely backed out. That left the hospital with no alternative for safe placement, even after the father changed his mind and decided that bringing her to a facility in Connecticut was a good idea…the facility essentially said “too late, you already threatened to sue us, and we have our other residents to worry about.”

      A cynic might think like you, but a rational person would consider that dozens of people at Boston Children’s saw something horrifying and agreed that Justina needed to be protected from her parents who want to direct the care under a diagnosis that was not properly vetted.

  • Marie

    When Children’s took away the parents, I wonder who they replaced them with to provide love and care? I also agree that there is a huge burden on the patient and their families – how to effectively navigate the medical system and be an advocate, yet still being likable and easy to get along with, when under an inordinate amount of stress and probably getting little sleep.

  • Becky Rangel

    “The circumstances do not diminish Children’s standing as a world-class hospital…”. You lost me there. Great article, except for that one line. This “circumstance” is a horrifying ordeal of pure evil. I can’t believe this is happening in America & more people are not outraged. I believe that they think there is more to this story that they’re not getting because they can’t believe this could really happen. All involved need to be investigated, fired, lose their licenses, & even JAIL TIME! A child’s life was stolen for a year! STILL being stolen!! A family has been ripped apart, a child’s health has rapidly deteriorated, not to mention the psychological & emotional stress. Even if they get her back, the rebuilding it’s going to take is going to be immense! I can’t even imagine going through this! I would’ve went to jail a long time ago.

    • StreyDawg

      It’s because rational people acknowledge that it’s foolish to make a decision based on limited information coming from one side of the argument, and because other people who have spent some time digging into some of the details of the past of this family are disturbed by what they find.

  • trixie

    What many fail to realize is there is a pattern at BCH. They have done this to many families.
    This case just happens to be most public.

    It is my duty as a parent to protect my children and yes that means from bad medical care.I am allowed to be a “difficult ”
    Parent. Where is the law that says otherwise?

  • http://www.juliegreene.name/ Julie Greene

    Every time I see a doctor I am profiled. As a result, I don’t receive proper medical care. The only way to change this is tor me to possibly relocate out-of-state, and certainly not allow my records to follow me, if that’s what it means to save my life. I agree that doctors on a whole have an inflated sense of self-importance. Why do doctors never say they are sorry or admit they are wrong? Why do they blame the patient for their own mistakes, especially if the patient speaks up? Why do patients end up with legal horrors, when all they are asking for is fair, unbiased care? It is in part because doctors will not admit their mistakes and don’t want their reputations damaged. A wrong diagnosis can kill you. You may end up with the wrong treatment or you may be denied the treatment you need. This misdiagnosis is commonplace and Justina’s situation isn’t the exception. I agree that doctors that have done wrong should do jail time. Justina, a child who did nothing wrong, spent a year in a prison. Thousands of others have had years or decades of their lives stolen. Many have died. This is not some trivial error, it’s a crime.

  • http://www.theAmandaTruthProject.com/ The Amanda Truth Project

    It is heartening to see this get more press, but I wish (as others have suggested below) that we call a spade a spade. These doctors endangered this young girl’s life based on these “biases” and the craze that ensued by removing custody and setting their patient in the psyche ward without even letting the gastroenterologist see her. And again as someone else has said, this is certainly not the first time BCH has done this – or other Children’s Hospitals, nor will it be the last until more people are aware of the problem and demand our rights back as parents. Yes, there are difficult parents, but we are the parents and with or without a subsequent medical degree have every right to our opinion based on what we know of our children’s lives (apparently patient history means nothing to Children’s Hospitals anymore). All that’s needed is mandatory testing before child abuse or neglect claims are permitted to be issued. Prove the hypothesis after calling authorities, and less action before that proof is established. Meanwhile, accountability for those who have wronged families wouldn’t be too much to ask.

  • http://soccermomjennileigh.blogspot.com/ Jenni Leigh

    I don’t know how anyone can read about these hideous circumstances and not speak up! “The hope now is that this sad situation can offer a teaching moment for the medical profession.” I hope for more! I hope for justice for Justina. I hope that the CPS involved are charged with kidnapping. I hope that somehow the parents are reimbursed for the extreme trauma they were forced to go through. I hope the doctors are charged with malpractice. I hope that this injustice is spread far and wide and nobody ever has to face what Justina and her parents have to go through. I hope that Justina can somehow recover her vibrant personality and improvement in her health. A teaching lesson is very low on the list of things I hope for. There is so much more to this than meets the eye and unfortunately this is happening more than most people realize!!

  • Lauren Stiller Rikleen

    For those hard on me for not being more negative in my language towards CHB, please retread the part where their emergency department, along with Dr. Korson, saved my son’s life. I do not forget that, even as I am horrified by the circumstances here.

    • trixie

      Honestly then your opinion is biased. Do you still see physicians at BCH? That is the impression I get. Lucky for you and your child escaped BCH. There are prob many good doctors doing amazing things for SOME patients, apparently if their parents “behave” and do not question anything.

      I can not tell you how many times over the years that my asking my children’s doctors questions about a dose , or disagreed with a suggestion on a treatment have caught huge mistakes in dosing, testing etc.

      Again it is MY child, not BCH ‘s child, not DCF’s child (even though they think Justinas is theirs, she is NOT) The Pelletier family was not going to flee the country or let Justina wither away in their home. They just wanted to go down the street to their regular provider!!! Not only were they denied that BCH are the ones who had to initiate the DCF and subsequent loss of custody.

      Parents are allowed to be upset they are allowed to get angry, especially if you take their kid away.

      So you are telling this cautionary tale about BCH world class facility? Their reputation has been hit hard.

      BCH

      • It’s only bias if you disagree

        “Honestly then your opinion is biased” – and everyone else throwing BCH under the bus without knowing the entire story is not? Laffo. Pot , meet Kettle. Hypocrite.

    • eat_swim_read

      Ack – this makes it so much worse, your gratuitous shoutout for Boston Childrens. How unprofessional, to retain ‘they are not so bad’ bias.
      Stunned that this made it onto this web site. My regard for WBUR just tanked.
      Hospitals are supposed to make herculean efforts to save lives, and many do so. Of course we are grateful for such work.
      But to slip in a pass when covering this story, and then a lame “but they were good for *my* family” is insulting.
      For shame. Stunned at this: paging Kelly McBride at Poynter Institute. This needs to be a case study.

  • Tammie Heazlit

    I was a sick child growing up. It seemed yearly I had a cast on one arm or the other. I remember during one hospital admission Ford diagnostic testing, various individuals would visit my room and casually ask me questions about how I had received each break, seeking out finite details. When I mentioned this to my mom she cried because she realized what the staff was presuming. She told my primary physician, angry by this time that focus was not on understanding what was wrong with me. She then proceeded to read every medical book she could get her hands on. This was in the sixties mind you. And although my mom was smart as a whip she had quit school at 16 to help support her mother and family who lived in abject poverty. So she did not have a degree or diploma or ged. None the less she had me diagnosed. 1.5 to 2 years before any of the specialists. I had a rare movement disorder and two of the symptoms were calcium deficiency. And loss of coordination…….thus the broken bones.

    If the medical professionals at the time had not jumped to conclusions and instead listened to my mom. … and my dad. …. both of whom watr gentle and loving parents. …. mom especially was An Angel that walked among us. …. then I wouldn’t have lost as much of my childhood as I did. There are definite cases of abuse and we must all be vvigilant in standing up against it. However in the rush to see to many patients and to maintain egos, important details get over looked while other assumptions get made and diagnosis gets hijacked. Patients have rights including who can or should be brought in on a case. There needs to be an improvement to the system so that a family can hire or have appointed a patient advocate to be their legal support. Otherwise there will always be these types of cases in varying degrees.

  • SeaandLight

    This sentence says it all:
    “The response to ‘difficult’ parents, however, requires reasoned judgment and collaboration, not dismissal of their concerns or, as in this case, more drastic reactions.” Our son came to Children’s in an ambulance from a community hospital one night. The ER docs were great, developed a potential diagnosis, shared with us the literature because it was an emerging illness not yet well known in children, talked to us about a plan including what tests would be needed first, and included us in decisions. But the next morning, while on the inpatient floor, a Chief Resident, while rounding, announced a different plan. When we questioned her about what changed, she became completely defensive and labeled us as “argumentative” and “uncooperative” and even went so far as to warn other staff about us. From that point on, staff refused to tell us anything and would just take vitals and leave the room saying “if you have any questions you have to ask the Doctor.” We suspect the Chief Resident saw what the ER doctor proposed as a diagnosis and didn’t see that we were awaiting testing to confirm it, announced an end result to the rounding team, got “caught” for leaping to conclusions and then decided to make the parents look crazy for questioning her instead of agreeing that the test results were still pending. By labeling us crazy to the staff, she covered over her mistake.

  • LawrenceNative

    This certainly diminishes any claim of BCH to be the advocates of children & families. This patient’s rights & the rights of this family have been completely ignored by medical “experts” who couldn’t admit their own limitations. A second opinion @ Tufts could have prevented this whole tragedy. Instead, they have declared themselves infallible (abetted by an incompetent DCF)-they have backed themselves into a corner where their only way out is to “bury” their mistakes while blaming the parents-pure evil.

  • susan_v

    This part of this article is good: “The case of Justina Pelletier not only reveals a series of systemic
    biases within the medical profession, but also the burden on families to
    be “good” and “likeable” in moments of deep vulnerability. ”
    Maybe need to discuss what has changed at BCH since this writer had a good experience.

  • donniethebrasco

    #FreeJustina

  • dtt00

    I think it is too early to know what lesson should be learned from this terribly sad story, i.e., whose diagnosis is correct, and whose incorrect, the doctor at Tufts or the one at Boston Children’s. The news reports do not give enough information for anyone to make a judgment. Mitochondrial disorders can be very difficult to diagnose, but they are not that rare and I’m sure that the pediatric neurologist at Boston Children’s must have seen it before. He has not been allowed to say in public what he saw to make him take such extreme measures, nor what others at Boston Children’s saw that convinced the hospital to back this young doctor. I am myself an older doctor, and I know that younger doctors are not always wrong.

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