Why you'll probably be misdiagnosed in your lifetime

Nearly every person will experience at least one diagnostic error in their lifetime. That means either a delayed diagnosis, a wrong diagnosis – or no diagnosis at all. That’s according to a report https://www.nationalacademies.org/projects/IOM-HCS-13-03 by the National Academies of Sciences, Engineering and Medicine from 2015 on diagnostic error. Today on the show we talk to a physician who was personally affected by the crisis, and New York Times editor and author of the book The Elusive Body: Patients, Doctors and the Diagnosis Crisis https://www.penguinrandomhouse.com/books/697282/the-elusive-body-by-alexandra-sifferlin/. If you liked this episode, check out these other episodes: - How science is taking tripping mainstream http://lnk.to/uT6xx4 - What If You Took The "Trip" Out Of Ketamine? https://lnk.to/GkjpoM - Could Psychedelics Become Tripless? https://lnk.to/a1FdVe - The Reality Of OCD http://lnk.to/rXFhMt Interested in more medical science? Email us your question at [email protected] mailto:[email protected]. Support public media with NPR+ and enjoy perks for over 25 podcasts like this one. This show’s perks include sponsor-free listening. Learn more at plus.npr.org http://plus.npr.org. See pcm.adswizz.com https://pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences. NPR Privacy Policy https://www.npr.org/about-npr/179878450/privacy-policy

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• 0:00Speaker 00

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• 0:17Emily Kwong?

  You're listening to Short Wave from NPR.

• 0:22Emily Kwong?

  Hey, Short Wavers. Emily Kwong, back in the host chair for a day. I missed you all. Hi. So, med school, it's all about learning the answers so you can one day diagnose your patients. But what happens if the medical mystery is you?

• 0:38Speaker 02

  I kind of felt this hard lump beneath my skin on the right side of my neck, just tucked up under my jaw.

• 0:47Emily Kwong?

  This is Diana Sejas. As a med student in the early 2000s, she noticed this hard lump on her neck was growing.

• 0:54Speaker 02

  Until at some point, it got big enough that it was there all the time. And I started to just be very aware of it.

• 1:01Emily Kwong?

  She was surrounded by doctors, and her personal care team wasn't worried. They told her this was probably a swollen lymph node. But Diana wasn't so sure. In her classes, she was learning about the characteristics of abnormalities, including tumors. And she thought this lump had a lot of red flags.

• 1:20Speaker 02

  It was hard, fixed in place, meaning I couldn't really move it around very well. And it just kept kind of growing slowly over time.

• 1:28Emily Kwong?

  So she sought out more opinions, but each time...

• 1:31Speaker 02

  It just was always, oh, don't worry about it, or it's nothing, or it's just a lymph node, it's just an infection. Or most of the time, they're like, it's just anxiety, or just anxious, because medical students get everything.

• 1:45Emily Kwong?

  Until years later, she got the lump scanned.

• 1:48Speaker 02

  And I remember while I was in the scanner, looking at the tech through the window, where they can kind of see into the room. And just based on the face that he was making, I was like, oh, I know something's going on.

• 1:58Emily Kwong?

  Diana had not even made it up the stairs from that appointment, when her doctor called and said, yeah, this is a tumor. By that point, it had infiltrated her lymph nodes and was wrapped around an artery. And in surgery, her doctor realized it was leaking.

• 2:13Speaker 02

  So usually, when that happens, he'll just kind of put a stitch in it, close it up, and it's fine. He went to put a stitch in the artery, and he said that the artery fell apart. So the wall was just destroyed. And so, of course, I started bleeding. There was, what I understand, a lot of activity in the OR at the time. You don't want to see that happen at all, especially for that major blood vessel to rupture in such a way.

• 2:41Emily Kwong?

  Diana learned all of this later. At the time, she was under anesthesia, and when she woke up...

• 2:47Speaker 02

  I was incredibly angry, and I couldn't figure out why, because everybody was being so nice to me. And things felt very cloudy. But at some point, I remember being in the room, in the bed by myself, and I looked down at my lap, and I was like, ooh, why is my grandmother's arm in my lap? That doesn't make sense. My grandma's still in North Carolina. I'm here, and I was in New Orleans at the time. Why is my grandmother's arm in my lap?

• 3:11Emily Kwong?

  Diana was hallucinating, because she was having a stroke. She lost feeling in her left arm and still experiences side effects to this day, all because of a tumor that was diagnosed far too late.

• 3:25Emily Kwong?

  So today on the show, the diagnosis crisis. How diagnostic error affects patients, and what the doctors who are the best at diagnosis do differently. You're listening to Short Wave, the science podcast from NPR.

• 3:45Speaker 00

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• 5:01Emily Kwong?

  Okay, so to delve more into the diagnosis crisis, Diana and I are going to be joined by Alexandra Sifferlin. She's an editor with The New York Times, who just wrote a whole book about this issue called The Elusive Body: Patients, Doctors, and the Diagnosis Crisis. So Alexandra, let's talk about the scope of the problem. After reporting this book, what did you learn about how widespread misdiagnosis is?

• 5:25Speaker 04

  So, one of the things that I found very shocking when I was doing the reporting for my book was just how great the scope is. The National Academies of Sciences, Engineering, and Medicine put together a big report where they tried to wrap their arms around diagnostic error and how common it was. And they ended up concluding that nearly every person will experience at least one diagnostic error in their lifetime, sometimes with devastating consequences.

• 6:00Emily Kwong?

  Wait, every person?

• 6:02Speaker 04

  Every person.

• 6:03Emily Kwong?

  Wow.

• 6:04Speaker 04

  Yes. And they defined diagnostic error as an incorrect diagnosis, a delayed diagnosis, or a missed diagnosis. So, person doesn't get a diagnosis at all.

• 6:18Emily Kwong?

  Is it a medical education problem? Is it that doctors don't have enough time with patients? What are the systemic reasons why this is happening?

• 6:26Speaker 04

  So I think it's multifactorial. And one of the interesting things that came through to me in my reporting was that both patients and physicians would complain about the very structure of the healthcare system, and how it felt like it was organized in this way that wasn't ideal for diagnoses, especially something that wasn't immediately obvious. So, patients would say, I have been having this health complaint for a really long time. It took me months to get an appointment with this doctor. I've gone from doctor to doctor. You know, this is the third person I'm talking to. Now that I'm in the room, and I feel like they have no time with me. And then, when I would talk to physicians,

• 7:10Speaker 04

  they would often share the same frustrations. So they would say, I have to see 20 patients in a day. I have at most 15 minutes, maybe less, with each person. I don't have enough time to literally sit and talk with them, or I don't have time to look more thoroughly through their record in a way that I would like to, or I don't have time to even think.

• 7:35Emily Kwong?

  You know, you mention, Alexandra, in your book, a particularly gifted diagnostician. His name is Gupta Daliwal. He's a professor of medicine at UC San Francisco. I'm so intrigued by him. What is he doing differently?

• 7:48Speaker 04

  Yes. What really interested me about Gupta Daliwal is he is called this master diagnostician, even though he kind of rejects the term. You know, he will say, in his view, being a master at diagnosis means recognizing that you will never be good enough, that you should always be working to improve.

• 8:11Emily Kwong?

  That's a real posture of humility that seems actually essential for being a good detective in this way.

• 8:18Speaker 04

  Absolutely. Because, you know, one of the things that he and many other physicians who I interviewed in this book explained to me was that you actually have to realize that you can improve in the diagnosis in order to really do the work that goes into becoming a better diagnostician. And in so many cases, physicians don't end up finding out whether or not they got a diagnosis right. And nobody is telling you later, you know that patient, like, you got it wrong. Sometimes that happens, but that's not the norm. There's not like a formal mechanism for that kind of feedback loop.

• 9:01Emily Kwong?

  I've never even thought about that.

• 9:03Speaker 04

  Yeah.

• 9:03Emily Kwong?

  Because my work performance, I get the feedback later on how it went.

• 9:08Speaker 04

  Right.

• 9:08Emily Kwong?

  Right? Like, whether an episode did well. But doctors are not getting that natural feedback when it comes to diagnosis.

• 9:16Speaker 04

  Not necessarily. So, Dr. Daliwal works in the ER, and so he's often seeing patients, briefly, and sort of, you know, you see them, you treat them, and then you discharge. And so what he realized was that he wasn't getting that kind of follow-up. He occasionally will go back and look at the last week or two weeks' worth of cases.

• 9:40Emily Kwong?

  Wow.

• 9:40Speaker 04

  And try to go through, did I get it right? Did I get it wrong? And if I got it wrong, why was that?

• 9:45Emily Kwong?

  Right. It's a skill that can be taught, yeah. Diana, I want to bring you back into this conversation. We heard what happened to you at the beginning of this episode. Now, you are a pediatric neurologist at UNC School of Medicine. You are a doctor. When you are diagnosing a patient, what is going through your mind? What are you doing?

• 10:03Speaker 02

  Yeah, I think it is a lot of things that are happening at once. I mean, you're collecting your information from your patient, so you're taking your patient history, meaning they are telling you everything that is going on with them. You're taking what you're seeing on your physical exam, trying to see what the body is trying to tell you or show you physically, trying to put all that together.

• 10:27Speaker 02

  With what I have seen in other patients or what I have learned, you know, while I was in training or through literature or through some of these other kinds of learning networks that we have, and take all of that, try to distill it to, OK, this is what I think is going on. And if there are other things that are on that list that are kind of vying for that number one spot, what other kind of workup I need to be able to do to figure out if that is the case?

• 10:55Emily Kwong?

  To diagnose properly requires, I'm hearing you both say, deep listening and making space for all of that, being aware of your cognitive biases, and then maybe having some mechanism for accountability and feedback and colleagues who can like come in and say, well, did you think about this? Can AI do this too?

• 11:21Speaker 02

  I'm biased. I mean, I'm a physician, so I'm going to be biased here. But I don't think that AI can do everything. I have had patients who will say, you know, they put something into ChatGPT and that's how they came up with questions to ask me. And that's absolutely fine. I see that as you are interested enough to engage in your own healthcare in a way that you know that you need a little bit more support in trying to figure out what questions to ask in this interaction. I also hesitate with AI in some ways because AI is something that is developed by humans, which means it's going to have some of the same biases incorporated as any other human. So if we're talking about an algorithm that has intrinsic biases against certain cultures or people of certain backgrounds, and they're the ones developing it,

• 12:07Speaker 02

  well, is that not just using a more technologically advanced tool to do the same things that some of us are unfortunately already doing in these interactions? I think it has its place, for sure. But I definitely don't think that it will be able to replace everything that is important in that diagnostic process in the clinic.

• 12:26Emily Kwong?

  Alexandra, do you have anything you want to add on?

• 12:28Speaker 04

  Yeah, I mean, I basically agree. I think there's some promising areas when it comes to very rare diseases in that, you know, because of the sheer amount of data, perhaps some AI tools could help with surfacing rare diagnoses options earlier in the process that I'm hopeful about. But to Dr. Sejas's point, like, I also think the human element of medicine can't really be replaced. And it really is the humanity that feels like it's missing from the healthcare system that patients really want and desire.

• 13:09Emily Kwong?

  Yeah. I mean, it sounds like this experience really shaped you as a doctor and how you approach patients in your own practice.

• 13:19Speaker 02

  Absolutely. I would say I like to think that I approach most of my patients, almost all probably. I'm trying to come from like a trauma-informed care practice model and try to also understand that. I mean, I've had my own negative experience with doctors. I know how this goes. I'm thinking of one patient that I had a few months ago where there was a really negative interaction that the parent had with someone in the healthcare system. And I had to just say, OK, let me stop for a second. Let me acknowledge this so that we can figure out how we're going to move forward together in our, you know, doctor-patient relationship. And sometimes that also means like thinking about different ways that I'll need to communicate. Maybe it means I need to have, you know, grandma in the room

• 14:03Speaker 02

  or I need to have a support person that I'm working with. And however that happens is however I need it to happen. It's whatever is best for that patient.

• 14:13Emily Kwong?

  Diana Sejas and Alexandra Siffran, thank you both so much for coming on Shorewave.

• 14:18Speaker 02

  Thank you.

• 14:19Speaker 04

  Thank you.

• 14:21Emily Kwong?

  If you liked this episode, share it with a friend. We have all kinds of content about medicine and how it's changing. You'll probably like our episodes on psychedelics and OCD treatment. Check them out at the link in our show notes. This episode was produced by Rachel Carlson and Burleigh McCoy. It was edited by our showrunner, Rebecca Ramirez, and fact-checked by Tyler Jones. Jimmy Keely was the audio engineer. I'm Emily Kwong. Thank you for listening to Shorewave from NPR.

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