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.