Why Can’t Anyone Tell Me What’s Wrong? | Alexandra Sifferlin

Ever have something clearly wrong, and yet no expert can tell you what’s causing it? Or, worse, they DO tell you, but they’re wrong? Nearly everyone will experience at least one diagnostic error in their lifetime. Not a minor mix-up, but a missed, delayed, or wrong diagnosis that shapes how long you suffer, what treatment you receive, and whether anyone believes something is actually wrong with you. For people in midlife, when the body starts sending new signals and the stakes of getting it right feel higher, that statistic carries a particular weight. Alexandra Sifferlin is a science and health journalist and the author of The Elusive Body: Patients, Doctors, and the Diagnosis Crisis https://amzn.to/4eXUT0v. She spent years inside hospital systems, talking with leading diagnosticians, tracing families who waited decades for answers, and mapping the structural gaps that let real suffering fall through. Her book is dedicated to her sister, who spent years being told her severe hip pain was a pillow-placement problem, until imaging revealed torn cartilage that required surgery. In this conversation, you will explore: Why receiving a diagnosis is more than a medical event, and how a diagnosis gives you permission to be ill (in the best of ways)How physicians actually build a diagnosis in real time, and what gets lost when appointments shrink to seven minutes The case of the Proctor family, five siblings from rural Kentucky who spent decades with a mysterious, painful condition before becoming the first diagnosed case of the NIH's Undiagnosed Diseases Program Why the best diagnosticians in the country share one habit that has nothing to do with medical genius How AI note-taking in the exam room is making some appointments more human, not less What to do when you've seen four practitioners and nobody can tell you what's wrong If you've ever walked out of a doctor's office with more questions than you arrived with, this conversation is for it. You can find Alexandra at: Website https://www.alexandrasifferlin.com/ | Instagram https://www.linkedin.com/in/alexandra-sifferlin-baba3a29/ | Episode Transcript https://www.goodlifeproject.com/podcast/diagnostic-error-misdiagnosis-medicine-alexandra-sifferlin Next week, we're sharing a really meaningful conversation with Tom Rath, whose books have shaped how millions of people think about their work and lives. His new book makes a direct challenge to the whole "find your passion, follow your purpose" framework, and argues that the source of real fulfillment isn't looking deeper inside yourself. It's what you contribute to other people every day. Be sure to follow Good Life Project wherever you get your podcasts so you don’t miss any upcoming episodes! Check out our offerings & partners: Join My New Writing Project: Awake at the Wheel https://jonathanfields.substack.com/aboutVisit Our Sponsor Page For Great Resources & Discount Codes https://www.goodlifeproject.com/sponsors/ Hosted on Acast. See acast.com/privacy https://acast.com/privacy for more information.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

  I am not saying that physicians are bad at diagnosing. They get it right 90% of the time. However, if you have 1 billion doctor's office visits a year, 155 million visits to the emergency room a year, you can quickly see how even a low rate of error can still affect a large number of people.

• 0:20Jonathan Fields?

  So that 10% adds up to millions of people every year living with a missed, a delayed, or a wrong diagnosis. Maybe you're even one of them. Maybe someone you know or you love is one of them. Well, my guest Alexandra Sifferlin spent years inside this problem, talking to the country's best diagnosticians, tracing families who waited decades sometimes for answers, and mapping exactly where the system is breaking down and what to do about it. Her book, The Elusive Body: Patients, Doctors, and the Diagnosis Crisis, is the most clear-eyed account that I've read of what's actually happening when medicine can't tell you what's wrong and what you can do about it. I'm Jonathan Fields, and this is Good Life Project.

• 1:03Jonathan Fields?

  And I want to start with a phrase that stopped me cold. We'll jump right into that after this short break.

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• 2:45Jonathan Fields?

  So we're having this this conversation, I think, a really interesting time. We're a couple of years on the tail end of this big global pandemic, where a lot of people were deeply reacquainted with their own physical and psychological well being. A lot of people suffered. And a lot of people started asking big questions. And also, a lot of people, I think, became a lot more attuned to what was going on in their body. They kind of, you know, any little thing that was happening, they started asking, what is this? You talk about something that you describe as a diagnosis crisis. What do you actually mean by that? And why does it matter so much now?

• 3:29Speaker 00

  So by diagnosis crisis, I I mean that there are millions of Americans who are living either without a diagnosis or they have experienced some kind of diagnostic error. So that could mean a delayed diagnosis. So you've spent a very long time, sometimes years, without a diagnosis. So it just took much longer than maybe it needed to. That could be a missed diagnosis. So you're sort of living undiagnosed or something wasn't caught early enough. That could also mean a wrong diagnosis. So you were given a diagnosis of, you know, pneumonia. It turned out to be heart failure.

• 4:13Speaker 00

  It was an incorrect diagnosis. And there are millions of people who have experienced this. And research suggests that nearly everyone will experience one diagnostic error in their lifetime.

• 4:31Speaker 00

  And I think what's important about it is your diagnosis is the most important piece of medical information that a person can receive because it informs everything else. Without a diagnosis, it's hard to get the best treatment for your health condition. It's hard to get insurance coverage for treatments or, you know, other appointments. You can end up spending a lot of time and money going from physician to physician, clinic to clinic, trying to get answers. And it's also just a sort of baffling experience and frustrating experience to feel like you're suffering without answers.

• 5:16Jonathan Fields?

  Yeah. I mean, you just shared the stat that the typical person, I guess, will have at least one misdiagnosis or missed diagnosis in their experience. And I think we all kind of feel like, all right, if it's something small, no big deal. You know, it's, it's this bug versus this bug and we'll get over it. But when the stakes start to get higher, you know, when you're walking through each day, suffering significantly and not knowing what's going on, this can be really devastating. I mean, it's, it's, you know, beyond, beyond naming, you know, an injury or an illness, saying like, okay, so we know what this thing is and like, here's what it is. I mean, what does a diagnosis actually give a person emotionally

• 6:01Jonathan Fields?

  and socially and practically?

• 6:03Speaker 00

  I love, there's this sociologist, Sarah Needleman, who says that a diagnosis gives you permission to be ill. And basically, you know, what she means by that, or how I've interpreted it, is a diagnosis provides something sort of just beyond the, the code for insurance coverage, let's say, which is very important. But it also provides this sort of emotional release and also it can change the way that

• 6:39Speaker 00

  Maybe you see what's happening to yourself because you have some sort of answer. You know, you have a kind of prognosis, perhaps ideally. But also, you know, let's say you were someone who was experiencing chronic pain for a very long time. And it's gone undiagnosed, you've gone to physicians, they don't know what's causing it, et cetera. And then finally, you do get a diagnosis. And it does, it does sort of change things. I can give a specific example. So my book is dedicated to my sister Francesca, who has dealt with undiagnosed conditions of a variety.

• 7:20Speaker 00

  But one more recent example was she had complained for years about severe hip pain. And that it would keep her up at night, it was really painful, long airplane rides, things really hurt. She would go to the doctor and she would never really get any answers. It would be, can you change your shoes? Maybe you need these inserts, maybe you should sleep with a pillow between your legs. Maybe you need to exercise more, you know, a variety of things. Finally, and this is years of this. Finally, she goes to a physician who does imaging. And it turns out that she had been living with torn cartilage in her joint. And she had to have surgery to fix a variety of hip injuries.

• 8:04Speaker 00

  But up until that point, it was, it was sort of like no one could fully understand the pain that she was in. Because nobody had sort of affirmed, yes, there's something wrong. There's actually torn cartilage, which is very painful and can only be resolved through this surgical procedure. But up until that point, it was like, oh, well, the physician is saying you just need to sleep with that pillow between your legs or whatever. And it was this diagnosis that was like, no, I was actually suffering from something very painful for a very long time. And this is, and this is why.

• 8:40Jonathan Fields?

  Yeah, I mean, when you hear a story like that,

• 8:43Jonathan Fields?

  and probably a lot of people either have their version of it, or they know somebody close to them that has some version of that. But like, you know, my mind immediately goes through like, why didn't somebody do that one definitive thing years earlier? That would have clearly shown, okay, so like, this is something we can point to and resolve. What's happening in medicine that stops those things from happening?

• 9:08Speaker 00

  You know, on the one hand, it's it makes sense like she's a young, she's younger than me. She's in her early 30s. And I think as a physician, you hear someone that young suffering from hip pain. And it's like, it's unlikely that it's something very serious. And I do think that there are, there's good reasons to not want to go overboard. And the first time that you see a patient to say, you need to get a CT scan, you need to get MRI. This stuff is very expensive. And so you're sort of going down the list. But I think the issue is when someone is coming to you again and again. Or, you know, for instance, you go to your usual doctor, you're not getting the care.

• 9:53Speaker 00

  You end up going somewhere else to try to get answers. But nobody is necessarily talking to each other. So the next person you see may not know your medical history or know that this was something you've complained about for a while. And so just the way that sometimes care can be a bit isolated and people are not necessarily talking to each other. I think things can get missed and can go for for too long unresolved.

• 10:19Jonathan Fields?

  Yeah, I mean, you brought up a couple of really, I think, important issues, too. One is, on the one hand, you're sitting there saying, why didn't somebody just order that scan or the imaging so we could see it? But you brought up the other, the other side of this, which is, you know, we have also been talking for a long time about going to really expensive diagnostics procedures without them being warranted or rate too quickly or way too early. And often the cost that's associated with them can be incredibly high. So there's this delicate balancing act, I would imagine practitioners are doing there. Like, we want to get as much information as we can to figure this out. And at the same time,

• 10:59Jonathan Fields?

  If we just say, let's order every test available to see what we can find. You know, insurance probably is not going to cover a whole bunch of that. If they're within a hospital or administration is going to look at those things and say like, this is actually not the way that we do things. So imagine the practitioner themselves are also doing a really delicate dance here.

• 11:20Speaker 00

  Yes, definitely. And I think, you know, one thing I try to get across in my book is that I am not saying that physicians are bad at diagnosing. They get it right most of the time. Estimates suggest that 90% of the time physicians are getting the diagnosis right. However, if you have, you know, there's something like 1 billion doctor's office visits a year, 155 million visits to the emergency room a year, that you can quickly see how even a low rate of error can still affect a large number of people. And so I think physicians are doing their best.

• 12:02Speaker 00

  Clinicians in general are trying, but what's hard is there are still a lot of missed cases or there's still a lot of diagnostic errors. And I think part of improving this is even just recognizing that this is, that this is the case. Often physicians are never made aware of the fact that that person they saw in the emergency room, they actually didn't get the diagnosis right. They don't get that sort of feedback loop. And so I do think that there are, everyone is trying, but there are places to improve.

• 12:37Jonathan Fields?

  Yeah, I mean, and if you're an ER doc, right? And somebody comes in, you may never see them again.

• 12:42Speaker 00

  Totally, yes. Or if you were seeing someone for, you know, not just in an emergency room setting, but you saw someone and they came to you, you know, so many, so few people have a primary care doctor these days. So let's say someone does have an appointment with you, you suggest a diagnosis, they get, you know, the medication or the treatment, but it doesn't resolve. That person may, instead of going back to you, they may go to somebody else and you never end up here. That that that case was missed. And I think that's one of the things that American patients especially find so frustrating is how much of it falls on you as the individual to be providing that information and that backstory and history to every single physician

• 13:26Speaker 00

  or specialist that you are seeing, or if it's not you, you're you're going on behalf of a family member, a child, a spouse, or something like that, and having to sort of retell or reprovide information again and again. And it is, it's it's it's an issue because of course clinicians don't have necessarily time to go through the last five years of somebody's medical record. So it's it can be a very frustrating experience on both ends.

• 13:56Jonathan Fields?

  Yeah.

• 13:59Jonathan Fields?

  And we'll be right back after a word from our sponsors.

• 14:03Jonathan Fields?

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• 15:17Jonathan Fields?

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• 16:02Jonathan Fields?

  But the other thing that has kept me a Bombas fan for all of these years, for every item you buy, Bombas donates an essential clothing item to someone facing housing insecurity. One purchased, one donated. Over 200 million donations and counting. So head over to Bombas.com/goodlife and use the code GOODLIFE for 20% off your first purchase. That's B-O-M-B-A-S dot com slash good life, code GOODLIFE at checkout. Good Life Project is supported by Kachava. So I used to think being salty was reserved for bad moods and pretzels. But lately, I have come to realize that a little salty edge actually makes life and especially dessert way more interesting. Any pastry chef will tell you that a pinch of salt isn't there to ruin the party.

• 16:46Jonathan Fields?

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• 17:29Jonathan Fields?

  You anchored to a certain extent, especially some of the early part of the book, in the story of a particular family, the Proctor family. Take me into that a bit, because I think it's really, it illustrates a lot.

• 17:40Speaker 00

  Yes. So, the Proctor family is a family of five siblings. They are from rural Kentucky. And they all experienced these episodes of basically, could almost describe it as freezing in place. So, they walk for, let's say, anywhere from five to 10 minutes, and all of a sudden, it's like their limbs are hardening, it's hard to move forward, it's incredibly painful. And they had no idea what was happening, basically. The oldest of these siblings, her name is Louise, and she is the one who, after decades

• 18:24Speaker 00

  of these episodes and going from physician to physician, finally, really, you know, went to her primary care doctor and said, "I need something else. I need help. I'm desperate. Is there anyone else out there?" And thankfully, her doctor knew of this program. It was new, at the National Institutes of Health, called the Undiagnosed Diseases Program, which is now the Undiagnosed Diseases Network. But basically, these are a group of clinicians and researchers who take on sort of the greatest medical mysteries, cases that have gone undiagnosed. And the Proctor family were invited to come to this network, and they were actually the

• 19:06Speaker 00

  first diagnosed case of the Undiagnosed Diseases Program. And they have, you know, what it has turned out to be, an incredibly rare genetic disorder where calcium almost immediately builds up inside of their arteries. So, that's what's sort of causing the pain and kind of this freezing up sensation. But this was a totally novel disease discovery. And, you know, it really took these siblings advocating for themselves to get there.

• 19:37Jonathan Fields?

  Yeah, I mean, it's... It's so powerful because you literally have an entire family that's affected by this, trying to figure out what's going on for years, but especially if it's something where it's really rare, like there's probably not going to be much of any literature about it, you know, so even if you did all the testing that you could do, if nobody has really identified, like this is a thing happening, how is a doctor supposed to then put all the things together, especially if it's a new condition and say like, this is something entirely new and different that we're saying like, we're going to name this now. I mean, it's interesting that, that there would be an entire center dedicated to this at this point. Is, I'm

• 20:22Jonathan Fields?

  curious, do you, and you may or may not know this, what does it take to qualify, to get seen by someone in that center?

• 20:31Speaker 00

  So they, in their applications, what they're looking for, and as you might imagine, they get an enormous number of applications every year, but the kinds of cases that they are taking on are, are illnesses that do look like they are either something rare or novel, like a presentation of symptoms that haven't been seen, or maybe there isn't much academic literature about them, and that the clinicians think this could be some sort of new or very rare genetic disorder. What they're also looking for are, even if this looks like

• 21:14Speaker 00

  it's something rare or potentially novel and never observed before, does this case potentially have the opportunity to shed light on something more common? So for instance, the Proctor family, they have this kind of immediate and abnormal calcification of their arteries, and their disease is incredibly rare. However, you know, calcification of the arteries in general is very common, you know, heart disease is very common. And so their case, you know, by looking at By looking at cases more on the extremes,

• 21:58Speaker 00

  this, the Undiagnosed Disease Network researchers are hoping that not only can they help families who have something rare, but ideally that research can also help inform more common diseases or just help inform the greater, the broader medical knowledge of disease.

• 22:16Jonathan Fields?

  Let's talk about the actual act of diagnosis. Because I would imagine also, we have a lot of ideas in our heads. We all watch a lot of TV. We see all the medical shows and what's depicted on them. It's like, you know, like of how to diagnose, like somebody comes in and nobody can figure it out. Well, how does diagnose actually happen in the real world versus what we imagine?

• 22:38Speaker 00

  So I think, you know, sometimes from these TV shows, it is, you know, it, it's like the doctor is some kind of Sherlock Holmesian character and they're just like picking up on things. And there are physicians like that and I have interviewed them and they're in my book and they're amazing. But a lot of what diagnosis is, is physicians or clinicians have basically gone through the very intensive medical training of, you know, in part, just pure learning and memorization of how the body works when it's well and how the body works when it's sick. And learning about various disease states.

• 23:25Speaker 00

  You know, what, what are the symptoms of heart failure? What are the symptoms of pneumonia? What does a shingles rash look like? And physicians learn to be very good at seeing a patient, hearing what is sometimes called their chief complaint. So what are they most concerned about? Looking at them, seeing sort of the physical signs of disease, listening to, you know, how it's affecting their body. And then really in their mind, immediately making this, this list of possibilities, ideally with the most common and likely diagnosis at the top.

• 24:06Speaker 00

  And then as you go down the list, they have alternative explanations of what it could be, sort of based on what is maybe less common, but still a possibility.

• 24:19Speaker 00

  And ideally, while they're listening to you, they're sort of combining all this medical knowledge in their mind and they're reaching like, okay, it is most likely that somebody with these symptoms and somebody who is like my patient's age, gender, et cetera, based on, you know, lifestyle behaviors, you know, what have you, that they can sort of line up these diagnoses and they can do it pretty fast. And then you have, you know, in some cases, you need supportive tests, like a diagnostic test, a blood test, a urine test, you know, what have you, to sort of confirm that that is the diagnosis.

• 25:02Speaker 00

  But I find that whole process of even just what a physician is doing, kind of in the moment, within seconds sometimes of hearing your conditions to be kind of amazing. And ideally, over time, they get quite good at it through training and through seeing lots and lots of cases and lots of different iterations of pneumonia, heart disease. You just, through that training, ideally come to see the different permutations of a condition.

• 25:34Jonathan Fields?

  Yeah, I would imagine, you know, on the one hand, it's a little bit mysterious, even mystical, but a lot of what's happening under the hood, it sounds like, is years and years and years of intense, to a certain extent, memorization of, you know, like, this set of things is most likely to be this set of, you know, like, of diagnostics or illnesses with this at the top and this less likely and this less likely. But so much of that also has to do with the physician's ability to gather the right information. You know, you described sometimes, okay, so you ask a lot of questions, right? You can ask a lot of questions if you only have a few minutes with somebody. So you can ask as many as like that time window permits.

• 26:18Jonathan Fields?

  You decide whether you need to order additional testing also. The physical exam, this is something that you speak to, which is, you know, I think so many times these days, you go to a doctor and they never touch you. And as a kid, you know, like, that was kind of like, how can that even be possible? We also had probably 20, 30 more minutes with a, you know, like, doctor when I was younger, but.

• 26:44Jonathan Fields?

  What are we losing when we're asking to go to a doctor because something is wrong with us and we want the best diagnosis possible? And the time spent on physical exams and what they can get from those physical exams seem to be getting shorter and shorter and shorter. And sometimes they don't exist at all.

• 27:06Speaker 00

  Yes, so there it is very interesting because I think the appointment with the physician, as you mentioned, has changed a lot. And some of that makes sense just with the emergence of more amazing technologies. You know, through the history of medicine, you've gone from the physician sort of, you know, basically almost like putting their ear to the body and then you have the stethoscope and then you have ultrasound and now you have ultrasound with maybe some AI on top of it. And in some ways that makes sense, like why wouldn't a physician use the technologies available to them? But I think where some of the experts who I spoke to in my book are very concerned

• 27:51Speaker 00

  is what is the correct balance here? Is a physician turning towards the ultrasound because they just want to use that and think it'll be a faster answer than actually doing the work of listening to the heart or, you know, feeling the body in ways where they could get, they could probably get to the diagnosis through that physical exam and it would be less expensive and it might be faster? And is that a skill that is maybe being lost that we should be concerned about? And I think there is some debate, like there's some interesting data about, you know, perhaps

• 28:34Speaker 00

  there are aspects of the physical exam that aren't as important as they were decades or even longer. But I think the lack of

• 28:45Speaker 00

  Sort of focus at the bedside of the relationship between the physician and the patient of that really listening to what the patient is saying, really feeling like the physician is hearing you. And, and just this idea that there are a lot of things that you can pick up just from being in the room with someone for a little while. So one of the physicians I speak to in the book is Dr. Brian Garibaldi, and he is now at Northwestern University. He was at Johns Hopkins for a very long time. And he is

• 29:24Speaker 00

  very invested in the best ways to continue the physical exam. So he often, when he's seeing a patient for the first time, he talks about how he will sometimes try to meet them in the waiting room, because then he can follow them into the, into his office, and he can watch how they walk, he can watch how they carry themselves, he can see, do they sort of wince when they're sitting down in the chair? Do they, how are they holding themselves on the table? And from that, he can immediately start to make some insights about their physical condition that could be really important to the diagnosis. And that he worries with these shorter appointments, or even just young physicians not getting

• 30:08Speaker 00

  that much time at the bedside, that these kinds of skills that are important to diagnosis could be lost.

• 30:14Jonathan Fields?

  Yeah, I mean, that makes so much sense. It's like how you can ask a lot of questions, or you can have people fill out all the forms, which we generally do before we see someone now. And, you know, we're, as we're filling out the forms, we're trying to remember, like, what, when did this come on? What do I feel? Has it, and, but then, when you're sitting across from somebody, just if you're really trained in how to observe, you'll see so much more nuance, so much more like context and subtext, that the person might not even be consciously aware of. But that, so they wouldn't have shared it with you because they weren't aware it's going on. But if you're really, like, looking and listening and feeling, they're going to pick up stuff that would probably be just critically important. I had a really interesting

• 30:59Jonathan Fields?

  Current experience, I'm so curious what your take is on this. Where I was in a doctor's office, first time I saw them. And they opened up a screen and they said, hey, do you mind if I just have my AI note taker running in the background? So I can really pay attention to you. And I was like, sure, sounds great. And they just sat there and we just had like face to face, personal, not writing anything down, trusting that the technology would take care of that. It felt so much more intimate, but also I felt like they were paying attention to me on a level and seeing things and then asking me questions about what they were seeing at a level that it had been years since I felt that. I'm wondering if you've, if you've sort of explored that, that shift at all.

• 31:42Speaker 00

  Absolutely. I'm very interested in this idea that artificial intelligence could actually help make aspects of medicine more human.

• 31:53Jonathan Fields?

  Yeah.

• 31:54Speaker 00

  That's a perfect example of that. Like the physician who's turned away trying to type their notes, it's because they have to do, they have to fill out all these notes for every single patient. Now all the appointments are short because they're seeing more people and often they end up having to do this late in the night if they don't do it now. So having the ability for AI to do that and for them to actually really sit and listen and observe you and see, you know, how is their skin coloring looking? Do they look swollen? You know, those small observations that perhaps could be important, but you as a patient aren't even aware that you need to articulate them. Like having more time for that, I think can be really valuable.

• 32:38Speaker 00

  And if in this current system, AI is able to sort of take away some of that administrative burden that has become such a huge part of physicians' practice and, and, and can infringe on appointments. I think that could be a great benefit.

• 32:56Jonathan Fields?

  Yeah, I mean, it just, I just know from personal experience, it felt better to me. You said before, like, we've all had that experience of talking to a doctor and having them kind of repeat something back to us and you're like, you didn't hear anything I just said. You're like, you're not actually listening to me. And I wonder if there's so much pressure on them to just record that they can't really listen to you and maybe this actually helps shift that. What's the difference in dynamic between a single person trying to get to an answer and a small collective of people trying to do the same thing together?

• 33:30Speaker 00

  Yes, so I think the collective is really important. There's so much value from having other people share their observations of the same patient and also there's so much value in sharing of opinions even about what could be going on. Having those moments where you as a clinician are considering an alternative is really important for diagnosis. Or hearing about an observation that maybe you missed or, or hearing from the nurse who did the entire intake and who, you know, has been maybe spending more time talking to

• 34:12Speaker 00

  the patient than the physician has and really incorporating them into the diagnosis can be really important. I think, you know, often on the TV shows, this is like in an emergency room situation, but it can be the case for just an average physician appointment, just having, making sure that the other clinicians involved are, you know, can be most helpful to figuring out what's wrong with the person in front of them.

• 34:41Jonathan Fields?

  Yeah, I mean, that makes sense to me and I think, you know, when part of the medical training, right, is rounding, you know, so you have somebody who's going around with a group of young, either students or young docs and, you know, you walk into a patient's room and they're all discussing often in front of the patient, like what they think is going on and.

• 35:02Jonathan Fields?

  It just seems like it would be so valuable and it seems like the value of that would get higher and higher and higher as it's not just med students or really young docs, but if you could regularly have very experienced people sharing this on a regular basis. And I wonder, does that really start to fall away the more senior you get? Or are there, you know, does that experience remain as a regular practice? When you're trying to diagnose, you know, like the further you get into your career?

• 35:31Speaker 00

  I personally feel from just the reporting that I've done for my book that the best diagnosticians, the people who are called the masters are the ones that sort of routinely bring other people in and sort of routinely work through diagnoses as a group and discuss as a group. For, for instance, there's this physician in the book, Dr. Gopreet Dollywall, who is widely considered to be one of the best diagnosticians in the country. I recently was fact checking something by another physician and I said, you know, would you agree? He's one of the best in the country?

• 36:09Speaker 00

  He's like, no, he's the best in the world. Like people love him. But, but anyway, what I think part of what makes him so good and special is he not only regularly interrogates his own diagnoses, so he actually will go back and look at all the cases that he saw maybe over you know, two week period and he'll follow up and see, did I get that right? Did I not get that right? If I didn't get that right? What did I do wrong? But then what he will also do is he will bring in other members of the team that he's on. And he's at the San Francisco VA.

• 36:50Speaker 00

  And whether it's younger physicians or other clinicians, they will together talk about these different cases and what they got right and what they got wrong and why. And I think that sort of constant work and collaborative work is really, is really important. You know, one of the things, one of the places where I think The collaborative work can be especially important is when you are at that level of a particularly complex diagnosis, or you are seeing a patient who has been to multiple physicians, has been to multiple specialists, and nobody can seem to figure it out. That's one of the things that makes the Undiagnosed Diseases Network, that makes

• 37:31Speaker 00

  that particular system such an interesting model, because they bring together experts of different disciplines. So you have a cardiologist, and a neurologist, and a geneticist, and a pediatrician. You have them all talking to each other about this particular case. And I think there's a lot to be gained from that kind of model. And that is something that could be modeled elsewhere at like, every major medical institution that has multiple people of different disciplines.

• 38:04Jonathan Fields?

  I mean, that just makes so much sense to me. And there are these, you know, sort of iconic institutions like the Mayo, or Cleveland Clinic, and places like that where they do, they staff that way. You know, basically, you get a whole team, it's not siloed, you get all the different specialties together, talking to each other and sharing information, brainstorming together and trying to figure it all out. I often wonder why that isn't just a more common model.

• 38:27Speaker 00

  I think part of it, too, is still, you know, the way that the system is set up, where there's just not a lot of time.

• 38:33Jonathan Fields?

  Yeah.

• 38:35Speaker 00

  And it does have to be a very conscious effort. And maybe it is something that is reserved for the more complex cases. You know, like if someone is coming in with a shingles rash, like a physician, you can take a look at that, you know what that is right away. You don't really need to consult anybody. But I do think where it could be more prioritized is like, who are these patients that are kind of falling through the cracks? Who are we seeing again and again, and they haven't gotten an answer? How do we, you know, regularly, consistently bring all these people together? And how do we make sure it's not on the patient themselves to try to figure out where to go to get that kind of, that kind of holistic care? Could it be just something that is a bit more regular?

• 39:21Jonathan Fields?

  Yeah.

• 39:23Jonathan Fields?

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• 40:08Jonathan Fields?

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• 42:03Jonathan Fields?

  And when you take somebody, like what happens to people psychologically and socially when they're told they've seen a battery of practitioners, right? And effectively, they're still at a point where they're just consistently being told, "We just don't know what's wrong." I mean, it seems like you take the original thing, and now, living with that level of uncertainty and frustration of utility, it's gotta just pile on at a completely different level.

• 42:33Speaker 00

  I think it's incredibly frustrating and isolating and scary. I think when you're not getting answers, you can get a bit desperate. I have spoken to a lot of people who sort of felt like the only answers for them were to look outside the medical system altogether. And, you know, sometimes they find relief that way, but often, you can end up, you know, trying treatments that, you know, at best, don't work, at worst, could be potentially damaging. But you're desperate, you're looking for some kind of relief. I would say, and I can't speak for everyone, obviously,

• 43:15Speaker 00

  but one thing that I noticed in my reporting was that people can be okay with uncertainty if it is sort of really communicated to them well from the physician or the medical team. Often, what people experience is actually not the physician coming and saying, "We just really don't know, but we're gonna try, here's what else we're gonna try."

• 43:45Speaker 00

  Let's keep trying to work on this together. Instead, it's like, okay, I sent you out for some tests. Maybe you got a little email notification from your portal and it just says like, negative for all these things. And then no, but there's no follow up. You don't really get this uncertainty communicated to you or you don't really feel like whoever you're seeing is comfortable in telling you that they don't quite know what to do. And I think that if medicine can become more comfortable with uncertainty and with communicating it and sort of navigating it and figuring out, you know, I, I will have to tell this

• 44:26Speaker 00

  person, I don't know what's going on, but let's make a game plan and let's, you know, keep trying. I, I, I do think that can lead to sort of a better patient experience, which is ultimately really important for someone who needs to kind of still be engaged with the medical system and not completely lose faith or lose trust in it. Because perhaps there isn't an answer now, but there could be down the line and you want that person to remain engaged.

• 44:56Jonathan Fields?

  Yeah. And I, I would imagine also for the physician as well. It's probably incredibly frustrating for them too.

• 45:05Speaker 00

  For sure.

• 45:06Jonathan Fields?

  You know, like we're talking about the patient experience and we've all been on that side and it's like, seriously, can somebody just tell me what's going on? But if you're, you know, a, a doctor and somebody keeps coming back to you and you keep having to basically tell them, I just don't know. It's going to be really hard to be that, to be on that side of it too.

• 45:27Speaker 00

  Absolutely. Cause I, I think many people go into medicine wanting to help people and wanting to heal people and wanting to provide relief. And when you can't do that, I mean, you, I think you just feel bad. It can also be sort of a shot to the ego. It's just not a comfortable position to be in and it's really frustrating. And I think what's

• 45:50Speaker 00

  What I hope there is a bit more of, and I was actually encouraged to, you know, hear from physicians that I include in the book who sort of feel this way, is acknowledging that, is it just that the person in front of me, I don't know what they have, but maybe somebody else does, and I can sort of put my feelings aside, I just know I need to get them some help, and here, I'm going to look up, you know, who's the best person to send them to? Or is it even that this person is experiencing something that could be sort of at the edges of, of current medical knowledge, and there's nobody who might know what's going on, but perhaps, you know, we can still, you know, work together, we could, there, there could

• 46:34Speaker 00

  be a kind of system in place where an undiagnosed diseases network isn't just for people with like, the rare, rare, rare conditions, but maybe there is a kind of place that you could send someone with something more medically unexplained, and then, and they could have a sort of positive, more holistic checkup. But I think finding, finding ways to kind of embrace the uncertainty and, and still feel like it's productive, I think that's important for physicians, too.

• 47:02Jonathan Fields?

  Yeah, I mean, I would imagine would have to be, especially because I feel like we're living in a time where so much of what patients bring to clinicians now falls under the umbrella of, um, nonspecific, you know, especially on the level of pain, um, there's, there's so much suffering without a really clear thing that people can point to, and oftentimes, even when there is a clear thing, turns out that that's not actually the thing. You brought up another point, though, which I think is important to speak to, which is, there is an edge to our knowledge also, you know, and you actually write about, you know,

• 47:45Jonathan Fields?

  the, the context of long COVID, you know, we're talking about a condition that did not exist a few years ago. Like it wasn't known to anybody because it came from a virus that wasn't circulating. And to this day, there, if you ask some people, they'll say, this is real. And if you ask others, they'll say, this is not real. This is a collection of other things, or we just haven't figured out exactly what's going on. Some people will say, this is exactly how, you know, like I would treat this. And this is what we've seen in work. And others are like, we have no idea what to do about this. You know? So when you're dealing with things that are really on the edge of scientific knowledge, you know, both as a patient and a clinician, how do we get OK with that?

• 48:31Speaker 00

  Yeah. That's what was one of the most fascinating parts of this book process. Because when I started writing, it was pre-COVID. So, you know, long COVID sort of emerged during the book reporting. And, you know, there had, there had been this understanding, but I think it was a little bit siloed, that viruses can cause sort of long-term, very, like a cascade of health issues

• 49:01Speaker 00

  in the body that can take a very long time to recover from and can cause, you know, even very lasting damage. But that wasn't necessarily something that the public knew. It wasn't necessarily something that everyone across medicine had an understanding for. And with time, I think the sort of effect, the potential, you know, post-viral illness has become much more understood. I do think, and when I talk to many physicians, I think people learned a lot from the COVID experience and learned a lot from long COVID

• 49:43Speaker 00

  in, in ways that I think will hopefully be helpful in just understanding that.

• 49:49Speaker 00

  They're understanding that, you know, there are people who are existing at the edges of medical knowledge, you know, for another example of this, in the last few years, researchers at Harvard basically confirmed that a very common virus, Epstein-Barr virus, causes MS. And that was just, you know, yet another example of, oh, you know, viruses can cause this cascade of health effects that we didn't fully understand. And you can go back and think about, you know, patients, maybe you saw in the past that, you know, we're talking about falling ill and that they've never fully recovered.

• 50:29Speaker 00

  And before that, you might not really have had much to offer them, but now there is this sort of understanding that you can have health complications from viruses that last for quite a long time. And so in some ways, it's sad because you think about all these groups of patients who this had been the case for for so long. And then in some ways, it's also hopeful that we've learned so much from this experience and hopefully, we all can use that to sort of question the assumptions that we've held about, you know, diseases that are sort of hard to explain or sort of defy current medical knowledge.

• 51:13Speaker 00

  And to hopefully keep a more open mind about those kinds of situations.

• 51:18Jonathan Fields?

  Yeah, I mean, I feel like we're in this moment where, on the one hand, so many of us, when we feel bad, we just want somebody to tell us what's going on so that we can do the thing or take the thing and be healed. And we're always looking to other people who we perceive as being the experts, the keepers of the wisdom and the solutions to make everything okay. But really, there's a lot of agency like that that we also are being invited into. And, you know, part of it, you know, is I often wonder is, do all the things, talk to all the people. And if you get to a point where they're saying, we don't have something that's going to help you right now, we don't understand what's going on.

• 52:05Jonathan Fields?

  Rather than saying, well, I'm at the edge of what science can can do for me. Let me just wait it out and hope for the best. Like really standing in a place of agency and saying, what else can I do? Is there something else that may not be part of mainstream? Or may not be sort of like, maybe I need to pursue five different paths. That might be really helpful to me. But again, there's the dance between that and going down the path of scams and things that may potentially be harmful. So it's such a delicate dance, I feel like.

• 52:38Speaker 00

  It really is. And I really feel for people who find themselves in that situation. And I think, you know, some some advice that that I've gotten in the reporting is, you know, asking every doctor that you're seeing, you know, like, what would you do in my situation? What other things could this potentially be? Is there promising research? Or do you know someone who might know about promising research in this area? It's it's unfortunate that people have to be their own advocates in some ways because you really, you do, you want the medical system to kind of take care of you. You want, you know, these answers.

• 53:20Speaker 00

  But there is a lot of incredible knowledge out there. And I think, you know, just trying to find the right research or, you know, medical group that can help you is really key. But I but I I also hope that there can be more places like that that can hopefully come from this, more that medicine can recognize that there are people who fall into these buckets of, you know, what could sometimes be called medically unexplained or or what have you. And should that be taken much more seriously? Should there be at every sort of hospital system or mainstream medical institution?

• 54:05Speaker 00

  Should there be a group of clinicians who function similar to the Undiagnosed Diseases Program at the NIH who really try to?

• 54:15Speaker 00

  To take on these kinds of cases and not sort of dump them off to the next person. I really think something like that could be valuable.

• 54:24Jonathan Fields?

  No, I think it'd be incredible. And then, of course, we have to talk a little bit about AI and diagnostics. We did a little bit, but you know, it seems like oftentimes before you even pick up the phone to talk to a doctor or like a nurse practitioner, who it may be, the first thing you do is you log on to whatever your favorite eye is. And you're like, this is what I'm experiencing. What's going on? And then the more, if you are somebody where you're not getting helped by practitioners, you're more and more likely to keep going back to AI and just entering in more and just really diving deep into it. And again, I feel like we're in this weird time where that can be incredibly helpful. Maybe it actually, it brings up things that you can then bring to your physician.

• 55:09Jonathan Fields?

  And then ask them about it that maybe they weren't even thinking about or exploring. And at the same time, there are risks.

• 55:16Speaker 00

  One of the interesting things when writing this book was at the beginning, when I, you know, this was 2019, 2020, when I was doing some initial research. And I would talk to many clinicians about artificial intelligence. Often I would be met with like, kind of a huge eye roll. And you know, this thing, it's often so overhyped, it never really works. And then you have this current iteration of large language models. So, you know, for individual people, you know, the technology of your, of the chatbot of your choice.

• 55:58Speaker 00

  And it has been fascinating to go back to the same clinicians and hear what they think. And I think it's honestly far more positive than I maybe even expected. And there's a few reasons for that. You mentioned the risks, which I do think are really important. Like, people do need to realize that when you're using one of these tools, it shouldn't replace going to see your physician, because there's a lot that can be missed, even if you're putting in a lot of your own medical data in there. Often, these tools sort of tell you what they think you want to hear. You know, it, it, it doesn't replace clinical judgment, however.

• 56:42Speaker 00

  I do think it can be very helpful. And many of the physicians that I interviewed for this book seem to agree. For instance, a lot of physicians talk about how there are ways to use these chatbots that could improve your physician appointment in ways that could actually help your diagnosis. So for instance, let's say you you know that you're going to the physician to talk about a cough, a persistent cough that you've had. If you tell the chatbot a bit about yourself and then you ask it, instead of just what's wrong with me, you could ask it, interview me as you would a physician and help me identify what are the most important things to highlight.

• 57:27Speaker 00

  And sometimes the bot can be really good at that, be really good at helping you figure out what to prioritize, what to talk to physicians about. Some of these, some of these artificial intelligence technologies that are being developed more, you know, they're not necessarily public facing, but they're for like medical community, but they're kind of relying on similar technology. You know, physicians are really liking them and are saying like, I am pretty impressed by the diagnostic capabilities of some of these tools. And it could end up being helpful for things that are kind of on the extremes.

• 58:04Speaker 00

  So maybe it's diagnosing kind of an average cough, but maybe it's also helpful for digging through the vast data and research to try to understand something that's really rare. There's been some initial studies about, you know, its ability to to make diagnoses for for more rare conditions. So I think there's a lot of promise there if sort of the balance is figured out and, you know, people know it can't replace a physician seeing you in person. But perhaps it can, it can help you with your medical appointment because it can help

• 58:44Speaker 00

  you identify the things that you should really raise to your physician that could be helpful.

• 58:50Jonathan Fields?

  Yeah, I mean, I feel like we're just, we're at such a frontier moment right now. When you think about where we are in terms of our ability to diagnose things, especially thorny things, uncertain things.

• 59:05Jonathan Fields?

  Are you hopeful about the future?

• 59:08Speaker 00

  I am hopeful about the future. I do think, I do think that there does need to be a more widespread recognition that diagnostic error is a problem and that it is worth bringing attention to. So, you know, for instance, there is no current

• 59:33Speaker 00

  mechanism by which like a hospital or a medical center is incentivized to improve their, their diagnostic rates, the rates of getting the diagnosis wrong. Or, you know, you know, incentivized to lower diagnostic error rates. They might not track them at all. And I think that was very interesting for me to learn in, in my reporting. So you have this data suggesting that most people will experience one diagnostic error in their lifetime, sometimes with severe consequences. And yet it's not really, it's not really tracked in, in a sort of systematic way. And, and I, I do think it needs to be

• 1:00:18Speaker 00

  more considered on both the sort of systems level and individual practitioner level. But that being said, I've been incredibly encouraged by a lot of the scientists, researchers, physicians, clinicians that I spoke to in my book, who are very invested in this. And I do think that with some of the technologies like artificial intelligence being used as a potential aid in diagnosis, I, I do think that can go a long way. I also think that there has been this recognition, perhaps post-COVID pandemic,

• 1:00:58Speaker 00

  that people really need and want more from their medical system than they're currently getting. And on the other side of that, I do think practitioners also want a more humane system for themselves and to feel like they're providing the kind of care that, you know, they went into medicine to provide. And I think that desire is on both ends, patient and physician. And I do think that

• 1:01:32Speaker 00

  There is that desire to improve. And I do think that, you know, science is rapidly, is rapidly moving forward and hopefully things will get better.

• 1:01:41Jonathan Fields?

  Yeah, I think we're all along. We'd all agree with that. It feels like a good place for us to come full circle. I always wrap with the same question, which is, in this container of Good Life Project, if I offer up the phrase "to live a good life," what comes up?

• 1:01:55Speaker 00

  To live a good life, I would say, is to care for what outlives you. So sort of the, maybe a little cliche, but, you know, leave the world better than you found it. But I really do believe that, that if you are living your life, sort of actively trying to make things better, I think that's just a fulfilling and a good way to live. And I think it's important to try to have that kind of influence to change what you can.

• 1:02:31Jonathan Fields?

  Thank you. So let's talk about some of the big ahas and actionable takeaways from this conversation. A few things I want to carry from this one. First, the permission to be ill piece. A diagnosis isn't just a code for insurance. It's the thing that tells the people around you, and maybe more importantly, it tells you that something real is happening. If you've been dismissed, that framing, it really matters. Second, the best diagnosticians aren't lone geniuses. They review their own mistakes on a two-week loop. They bring in just other people and points of view, and they stay uncomfortable with certainty in a way that keeps them accurate. If your care has felt very singular, very

• 1:03:15Jonathan Fields?

  siloed, that's worth naming. And third, the AI chatbot advice, not for diagnosis, but for preparation. Ask it to interview you the way a physician would before your appointment. Help me figure out what to prioritize, what to raise, what I might be leaving out. That reframe is small, and it could genuinely change what happens in the room. I noticed this week, when you feel like you're carrying any unexplained thing that you've stopped pressing on, and maybe ask yourself whether you've actually run out of passion, or whether you've just run out of the ones that felt easy. And hey, before you go, next week, I am sitting down with Tom Rath, whose books from Strength Finders 2.0 to How Full Is Your Bucket have shaped how millions of people

• 1:03:59Jonathan Fields?

  think about their work and lives. His new book makes a direct challenge to the whole find your passion, follow your purpose framework, and argues that the source for real fulfillment isn't working deeper inside yourself. It's what you contribute to other people every day. In a world where AI is replacing more of what once made us feel valuable, that argument lands differently than it would have a few years ago. So be sure to follow Good Life Project wherever you get your podcasts, so you don't miss that or any upcoming episodes. And do me a favor, just a couple of second favor. Share this episode with just one person who's been in that loop of appointments with no answers. It might matter more than you know. This episode of Good Life Project was produced by executive producers Lindsay Fox and me,

• 1:04:44Jonathan Fields?

  Jonathan Fields. Editing help by Troy Young. Chris Carter crafted our theme music. And if you haven't already, follow us wherever you get your podcasts, so you never miss a conversation. Until next time, I'm Jonathan Fields, signing off for Good Life Project.

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