Kevin Jones: Can Embracing Uncertainty Lead To Better Medicine?

Feb 24, 2017
Originally published on August 10, 2018 9:26 am

Part 3 of the TED Radio Hour episode The Spirit Of Inquiry.

About Kevin Jones' TED Talk

Sometimes, doctors just don't have the answers. Surgeon Kevin Jones says having the humility to acknowledge this leads to better medicine.

About Kevin Jones

Kevin Jones a professor at the University of Utah and surgeon at Primary Children's Hospital and the Huntsman Cancer Institute, where he also directs the KB Jones Lab.

His studies focus on a group of cancers called sarcomas, which are cancers of the flesh and bones. Jones is the author of the book What Doctors Cannot Tell You: Clarity, Confidence and Uncertainty in Medicine.

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On the show today, the Spirit of Inquiry, why the question is often more important than the answer and what happens when one question leads to another?

KEVIN JONES: That's how every medical interview that I have with a patient begins - questions that they have, questions I have for them, trying to put the pieces together and understand what's happening.

RAZ: This is Kevin Jones. He's a surgeon who specializes in a rare group of cancers called sarcomas. And he says doctors, no matter how many questions they ask, definitely don't have all the answers.

JONES: I mean, there's been a fairly paternalistic view of medicine where we just kind of - we take care of patients, you know. We manage all this uncertainty and things for them. And I just - I react unhappily to that because I think that there is an element of - certainly not malintent, but there's an element of dishonesty when we presume to know more than we know.

RAZ: I mean, somebody in your position is sought out to give answers, right? Like patients come to you, they say Dr. Jones, you know, am I going to die? And you don't always have the answers.

JONES: Absolutely. No, I mean, we - especially when it comes down to predictions, I mean, just like the weathermen, we're terrible at making predictions. And yet we have to.

RAZ: Here's Kevin Jones on the TED stage.


JONES: Medicine is science. Medicine is knowledge in process. Sometimes in the media and even more rarely, but sometimes even scientists will say that something or other has been scientifically proven. But I hope that you understand that science never proves anything definitively forever. Now, I am a surgeon, and I would tell you that every one of my patients is an outlier is an exception. People talk about thinking outside the box, but we don't even have a box in sarcoma. What we do have is we take a bath in the uncertainty and unknowns and exceptions and outliers that surround us in sarcoma is easy access to what I think are those two most important values for any science - humility and curiosity.

Because if I am humble and curious when a patient asks me a question and I don't know the answer, I'll ask a colleague who may have a similar albeit distinct patient with sarcoma. We'll even establish international collaborations. Those patients will start to talk to each other through chat rooms and support groups. It's through this kind of humbly curious communication that we begin to try and learn new things. Hopefully, science remains curious enough to look for and humble enough to recognize when we have found the next outlier, the next exception which teaches us what we don't actually know.

A colleague of mine removed a tumor from a patient's limb. He was concerned about this tumor, but his conversations with the patient were exactly what a patient might want. He said I got it all, and you're good to go. She and her husband were thrilled. They went out celebrated, fancy dinner, opened a bottle of champagne. The only problem was a few weeks later, she started to notice another nodule in the same area. Turned out, he hadn't gotten it all, and she wasn't good to go.

My colleague came to me and said, Kevin, would you mind looking after this patient for me? I said why? You know the right thing to do as well as I do. You haven't done anything wrong. He said please just look after this patient for me. He was embarrassed, not by what he had done, but by the conversation that he had had, by the overconfidence. So I performed a much more invasive surgery and had a very different conversation with the patient afterwards. I said most likely I've gotten it all, and you're most likely good to go. But this is the experiment that we're doing. We're going to work together to find out if this surgery will work to get rid of your cancer.


RAZ: So basically, you just told her, like, she would always need to be a little uncertain?

JONES: Yeah. We never know completely. We have to be careful about coming across as overly confident. I mean, patients respond very well to physicians who are brimming with confidence. But if it doesn't work - you know, they're taking whatever pill and whatever it was is not getting better - they're kind of banging their head against a wall. And they say, either I did something wrong or my physician's an idiot or (laughter), you know, they start to have incredible distrust of the process.

RAZ: So, I mean, you're saying, like, acknowledge, you know, the room for error - right? - for uncertainty with patients.

JONES: Absolutely, absolutely. You know, you could either have a physician who's a used car salesman or something who says don't pay attention to all these holes that are in our abilities and in our our knowledge. Or you can have a physician that basically functions as a teacher, as a mentor, in the process of going through this experience and sort of standing next to the patient and pointing out the holes (laughter). This is what we don't know. This is what we're yet to find out. And I still think that we can acknowledge, look, I don't have a black-and-white answer for you because it doesn't exist. Anybody who gives you a black-and-white answer is either bluffing or is making up some part of it.


JONES: Almost 20 billion times each year, a person walks into a doctor's office, and that person becomes a patient. You or someone you love will be that patient sometime very soon. How will you talk to your doctors? What will they tell you? I have conversations with these patients with rare and deadly diseases. These conversations are terribly fraught. They're fraught with horrible phrases like I have bad news or there's nothing more we can do. Sometimes these conversations turn on a single word - terminal. Silence can also be rather uncomfortable. Where the blanks are in medicine can be just as important as the words that we use in these conversations. What are the unknowns? What are the experiments that are being done?

I'll never forget the night that I walked into one of my patients' rooms. He was a boy I had diagnosed with a bone cancer a few days before. It was almost midnight when I got to his room. He was asleep. But I found his mother reading by flashlight next to his bed. Turned out that what she had been reading was the protocol that the chemotherapy doctors had given her that day. She had memorized it. She said, Dr. Jones, you told me that we don't always win with this type of cancer. But I've been studying this protocol, and I think I can do it. I think I can comply with these very difficult treatments. I'm going to quit my job. I'm going to move in with my parents. I'm going to keep my baby safe.

I didn't tell her. I didn't stop to correct her thinking. She was trusting in a protocol that, even if complied with, wouldn't necessarily save her son. I didn't fill in that blank. But a year and a half later, her boy, nonetheless, died of his cancer. Should I have told her?


RAZ: One of the things you said in another part of your talk, Kevin, is that you see every patient as, like, a new experiment, right? And every time, it's a gamble of if it's going to work or not.

JONES: Yeah. We're going to find out with someone's life and health, and so it counts. It matters. You know, it's interesting because I think we all like stories, right? We like a beginning and a middle and an end. And so scientists are wanting to tell a story. And the challenge is that sometimes the story can carry us away.

And so if we don't have humility, then we will stop honestly inquiring about things. And so that's why I really think that the humility is critical because we have to sort of hold ourselves back. We have to rein ourselves in when we are so excited about a story that we can start to see things where they aren't really there.

RAZ: Yeah. Yeah, I mean, we're wired to ask questions, right? Like as Michael Stevens said earlier, you know, like, we sort of emerged from the savannas of East Africa out into the wider world because we were curious.

JONES: Yeah. We ask questions, yeah, totally agree. And what's so critical, I think, is asking the correct questions. And really, we cannot really say with science what is going to happen. We can guess and then we can test it and see what happens. So I really think the key is asking the correct questions. What can I do? What can I choose? And can I test that moving forward? I love that about scientific inquiry is that it is intrinsically forward-looking.


RAZ: Dr. Kevin Jones - you can see his full talk at On the show today, ideas about The Spirit Of Inquiry. I'm Guy Raz, and you're listening to the TED Radio Hour from NPR. Transcript provided by NPR, Copyright NPR.