Please watch this, all 21 minutes of it:
This Ted Talk was produced in 2011. While Dr. Goldman was speaking eloquently and so bravely about his humanity as a physician, my daughter Sammi was in kindergarten. That is, she was in kindergarten when she wasn’t on an operating table or in the gastroenterology clinic at our local children’s hospital, being treated for eosinophilic esophagitis, a condition with which, we would learn three years later, she had been misdiagnosed.
Dr. Goldman’s talk gives me hope. My bitterness about the lost and wasted years we spent engaged in the fight against the wrong enemy has not resulted in a lawsuit, not because I am not furious and not because I am not heartbroken and not because I don’t believe we could win. We haven’t sued because Sammi’s doctors are human beings.
Human beings make mistakes. I can accept that; I can feel compassion for what I imagine — even hope — is the struggle and shame in the heart of her gastroenterologists once they realized what they’d missed. It is when Dr. Goldman talks about what to do about these mistakes and how to move forward from them that my heart becomes stonier:
“Here’s the problem: If I can’t come clean and talk about my mistakes, if I can’t find the still-small voice that tells me what really happened, how can I share it with my colleagues? How can I teach them about what I did so that they don’t do the same thing?”
To approach and reword this question as a patient or — in my case — as the mother of a patient, if legal action is the only way to voice my frustration or receive closure on a medical mistake, is it any wonder that we are a culture rampant with medical malpractice suits?
Or, even more head-bang-inducing, which came first, the doctors whose refusal to apologize infuriates patients to the point of lawsuit, or the suing patients who make doctors afraid to apologize?
I can’t know why the doctors who sat with me and my husband at the side of my daughter’s bed in the dozen post-endoscopy recovery rooms utterly dropped out of her care once their mistake was discovered — why they didn’t visit her in the hospital on the day of her major cardiac surgery, why they didn’t at any point say that they were sorry they had missed the real problem all along and were glad we finally had an answer — but I suspect that they were afraid we would sue them. Had any of them come to us and said, as Dr. Goldman did, that they had suffered with the shame of having missed something important, I would have felt better. It would not have given my daughter back her lost years, but it would have revealed their humanity.
More than anything, it might have reassured me that other children would not suffer the same fate. I hope this assertion by Dr. Goldman is true:
“They want to share their stories. They want to be able to say, ‘Look, don’t make the same mistake I did.’ What they need is an environment to be able to do that. What they need is a redefined medical culture. And it starts with one physician at a time.”
This Ted talk is five years old. Sammi, my daughter, is ten years old, with about eighteen months of good health behind her now. I struggle regularly with what to do with all the mistakes in her history. How can I take her experience — and mine, of parenting her through it — and build something worthwhile from it? Like the physicians Dr. Goldman interviewed, all I can say now is that I want to share our story. I want to be able to say “look, don’t make the same mistakes we did.”
I want a redefined medical culture. And it starts with one patient at a time.
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I can only imagine the struggle of coming to terms with the feelings this terrible journey has wrought for you and your family, and to come to terms with the choices before you. I so applaud your effort to stay in that struggle and not take any way just because it is available. And, especially, I want to support in every way that I can, your efforts, and the doctors’, to create the best environment for the learning from mistakes made to serve all patients and doctors, so that they can be avoided!
Thank you, Andrea. Learning from mistakes is, as we know, the whole reason we come to this life!
You’re already doing something to share your story – you’re writing about it, writing this blog and your book and your essays. Medical students read books like this one will be and discuss them; their faculty invite the authors to come and talk to their classes or clubs or seminars. You are an excellent writer – write the book, get a few of them to read it, and they’ll all read it. I’m a medical librarian and I can promise I’ll buy it for my library when it’s published.
SES, I can’t tell you what your comment means to me. I have no idea if this is reaching any of the people who I think need to read it. Now I know — it has found someone like you, who has the power to share the story in an impactful way. Thank you so, so much for writing!
Living in a world where everyone’s first thought is to take legal action is rather awful, we are all humans, we all make mistakes. Doctors should be allowed to be human, for too long they have been treated like gods, when in fact they are just like everyone else. I hope more people understand this as well as you do! Someday I also hope they teach doctors differently, allow for them to work normal shifts not 24 hours on 24 off, tired people make more mistakes.
That TED talk is incredibly thought-provoking and there is so much of it I agree with both as a mother of a heart child and as a former healthcare professional. I was lucky in my professional life in that I worked in an incredibly supportive environment which encouraged debriefing and discussion around the mistakes that we made so that we could all learn from them and it’s something I’d love to see replicated more widely. All healthcare professionals are human and will make mistakes. I think it makes a huge difference to patients when mistakes can be admitted and apologised for but I can see how the fear of litigation prevents that happening – and yet the lack of apology and acknowledgement is often what leads to further anger and litigation. I am so sorry to hear that you and your family were fighting the wrong enemy for so long because of a misdiagnosis and I think you are doing an amazing job of sharing your story and helping to raise awareness. This is how we as parents of children with complex medical needs can help change things – one patient at a time. Thank you for sharing this with #hearttoheartlinky
[…] any regular readers of this blog know, is that what would have solved her health problems were doctors who spoke to each other, consulted with each other, asked each other simple questions about the patients they had in […]