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

I am not saying that physicians are bad at diagnosing. They get it right 90% of the time. However, if you have one 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. 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 guess, Alexander Sifolin 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 Illusive Body, Patients, Doctors, and the Diagnosis Crisis is the most clear right 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. And I want to start with a phrase that's not me cold. We'll jump right into that after the short break. ["Good Life Project"] When considering care for a loved one with dementia, you want peace of mind that they'll be in the very best hands, with care delivered by expert teams and supported to live life happily, comfortably in a dedicated environment that supports independence. You can expect all of this and more with Southern Down Care Home. You're invited to our Open Day on Saturday, the 20th of June to take a look around our home and discuss what support you need. Visit budgester.com slash Open Day for more information. Hello, it's Giovanna Fletcher from Happy Mum, and I'm sponsored by Motorway, the easy way to sell your car for a great price. As a mum, anything that helps take a little bit of mental load off is a win. And Motorway really does that. 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Search Chase Boosted Saver. 18 plus UK residents available to new Chase current account customers for their first 31 days, 4.41% gross, interest paid monthly eligibility in terms of supply. So we're having 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? So by diagnosis crisis, 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. 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. And I think what's important about it is, 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. Yeah. I mean, you just share the stat that the typical person, I guess, will have at least one misdiagnosis or missed diagnosis and their experience. And I think we all kind of feel like, all right, if it's something small, no big deal. You know, like 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, you know, 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 and socially and practically? 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 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 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 are someone who is 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 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. 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. But up until that point, 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. That 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 why. Yeah, I mean, when you hear a story like that 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? You know, on the one hand, 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 unlikely that it's something very serious. And I do think that there are, there's good reasons to not want to go overboard in 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, 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 too long unresolved. 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 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 costs that's associated with them can be incredibly high. So there's this delicate balancing act that I would imagine practitioners are doing. They're like, we want to get as much information as we can to figure this out. And at the same time, 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. 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 of physicians are getting the diagnosis right. However, if you have, you know, there's something like one billion doctors 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. 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 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. You 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. Yeah, I mean, and if you're an ER doc right and somebody comes in, you may never see them again. Totally, yes. Or if you were seeing someone for, not just in an emergency room setting, but you saw someone and they came to you, 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 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 hearing 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 or specialist that you are seeing, or if it's not you, you're going on behalf of a family member, a child, a spouse or something like that, and having to sort of retell or reprove information again and again. And it is, 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 can be a very frustrating experience on both ends. Yeah. And we'll be right back after a word from our sponsors. The most technologically complex FIFA World Cup ever? Not just another day for Verizon Business. From private 5G networks in every stadium to 80,000 miles of fiber and end-to-end security, Verizon Business is powering every broadcast, every replay, every... Go! If we can do this for the FIFA World Cup, imagine what we can do for you, Verizon Business. When considering care for a loved one with dementia, you'll want peace of mind that they'll be in the very best hands, with care delivered by expert teams and supported to live life happily, comfortably, in a dedicated environment that supports independence. You can expect all of this and more with Southern Down Care Home. You're invited to our Open Day on Saturday, the 20th of June, to take a look around our home and discuss what support you need. Visit barchester.com slash Open Day for more information. Hello, it's Javana Fletcher from Happy Mum, and I'm sponsored by Motorway, the easy way to sell your car for a great price. As a mum, anything that helps take a little bit of mental load off is a win, and Motorway really does that. You can get an instant valuation, add your car details straight from your phone, and then it goes into their daily online auction, where over 8,000 verified dealers all compete to give you their best offer. It just takes the stress out of something that can feel a bit daunting. You don't need to know all the ins and outs. Motorway pretty much walks you through it step by step, and on average, sellers get £1,600 plus more than a part exchange. Claims apply, see Motorway.co.uk forward slash claims. Find out what your car is worth today at Motorway.co.uk. And if you sell your car on Motorway this June, you could even be in with a chance of winning a BMW 1-series worth over £40,000. 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 illustrates a lot. 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 ten 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 of these episodes and going from physician to physician, finally really 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 first diagnosed case of the undiagnosed diseases. And they have 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 it really took these siblings advocating for themselves to get there. Yeah, I mean, 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. There's probably not going to be much of any literature about it. 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 seeing. Like, we're going to name this now. I mean, it's interesting that there would be an entire center dedicated to this at this point. Is, I'm curious, you may or may not know this. What does it take to qualify to get seen by someone in that center? 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 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 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, calcification of the arteries in general is very common. Heart disease is very common. And so their case, by looking at cases more on the extremes, 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 broader medical knowledge of disease. 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 how to diagnose like somebody comes in and nobody can figure it out. How does diagnose actually happen in the real world versus what we imagine? 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. 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. 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. 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, age, gender, etc., 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. But I find that whole process of even just what a physician is doing kind of in the moment within, 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, you know, permutations of a condition. 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 that 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, and you describe 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. 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 what are we losing when we're asking to go to a doctor because something's 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 sometimes they don't exist at all. 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 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 to, 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 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 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 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 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 have wins when they're sitting down in the chair? 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 that much time at the bedside that these kinds of skills that are important to diagnosis could be lost. 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 as we're filling out the forms, we're trying to remember like, what did this come on? What do I feel? 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. So they wouldn't have shared it with you because they weren't aware of what's going on, but if you're really looking and listening and feeling, they're going to pick up stuff that would probably be just critically important. I had a really interesting current experience, and so curious what your take is on this, where I was in a doctor's office the 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 takeer 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 sort of explored that shift at all. Absolutely. I'm very interested in this idea that artificial intelligence could actually help make aspects of medicine more human. That's a perfect example of that. The physician who's turned away trying to type their notes, it's because 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 how is their skin coloring looking? Do they look swollen? Those small observations that perhaps could be important, but you as a patient aren't even aware that you need to articulate them. Having more time for that I think can be really valuable 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 can infringe on appointments, I think that could be a great benefit. Yeah. I just know from personal experience it felt better to me. You said before, 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 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? Yes. 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 hearing from the nurse who did the entire intake and who has been maybe spending more time talking to the patient than the physician has and really incorporating them into the diagnosis can be really important. I think 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 can be most helpful to figuring out what's wrong with the person in front of them. That makes sense to me and I think when part of the medical training is rounding, so you have somebody who's going around with a group of young either students or young docs and you walk into a patient's room and they're all discussing often in front of the patient what they think is going on. 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. I wonder does that really start to fall away the more senior you get or does that experience remain as a regular practice when you're trying to diagnose like the further you get into your career? 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 instance, there's this physician in the book, Dr. Gopreet Daliwal, 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, would you agree he's one of the best in the country? He's like, no, he's the best in the world. People love him. 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 a 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 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 constant work and collaborative work is really important. 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 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 every major medical institution that has multiple people of different disciplines. That just makes so much sense to me and there are these iconic institutions like the Mayo or Cleveland Clinic and places like that where they staff that way. Basically, you get a whole team, it's not siloed, you get all the different specialties together talking to each other and sharing information and brainstorming together and trying to figure it all out. I often wonder why that isn't just a more common model. I think part of it too is still the way that the system is set up where there's just not a lot of time and it does have to be a very conscious effort and maybe it is something that is reserved for the more complex cases. If someone is coming in with a shingles rash, you can take a look at that, you know what that is right away, you don't really need to consult anybody. I do think where it could be more prioritized is who are these patients that are falling through the cracks? Who are we seeing again and again and they haven't gotten an answer? How do we 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 holistic care? Could it be just something that is a bit more regular? Yeah. And we'll be right back after a word from our sponsors. Hello, it's Giovanna Fletcher from Happy Mum and I'm sponsored by Motorway, the easy way to sell your car for a great price. As a mum, anything that helps take a little bit of mental load off is a win and Motorway really does that. You can get an instant valuation, add your car details straight from your phone and then it goes into their daily online auction where over 8,000 verified dealers all compete to give you their best offer. It just takes the stress out of something that can feel a bit daunting. You don't need to know all the ins and outs, Motorway pretty much walks you through it step by step and on average sellers get £1,600 plus more than a part exchange. Claims apply, see Motorway.co.uk forward slash claims. Find out what your car is worth today at Motorway.co.uk. And if you sell your car on Motorway this June you could even be in with a chance of winning a BMW 1 series worth over £40,000. 2.25% AER fixed boost for 12 months. Right now with Chase you could be boosting your way to a new kitchen. Exactly. Search Chase Boosted Saver. 18 plus UK residents available to new Chase Currentacomp customers for their first 31 days, 4.41% gross. Interest paid monthly eligibility in terms of supply. And when you take somebody, 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 and futility it's got to just pile on at a completely different level. 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 trying treatments that 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 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 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 will have to tell this person I don't know what's going on but let's make a game plan and let's you know keep trying. 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. Yeah and I would imagine also for the physician as well it's probably incredibly frustrating for them too. For sure. You know like we're talking about the patient experience 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 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 on that side of it too. Absolutely because 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 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 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 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. There could 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 ways to kind of embrace the uncertainty and and still feel like it's productive I think that's important for physicians too. 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 non-specific 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 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 to 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 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 okay with that? 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 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 in in ways that I think will hopefully be helpful in just understanding that 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 maybe 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 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 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 and to hopefully keep a more open mind about those kinds of situations 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 like 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 and and the solutions to to make everything okay um 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 um 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 um 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 you're 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 um 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 it's such a delicate dance I feel like 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 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 should there be a group of clinicians who function similar to the undiagnosed diseases program at the NIH who really try to 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 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 you know like a nurse practitioner who may be the first thing you do is you log on to whatever your favorite eye is and be 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 and then ask them about it then maybe they weren't even thinking about or exploring and at the same time there are risks 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 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 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 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 therefore 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 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 you identify the things that you should really raise to your physician that could be helpful 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 are you hopeful about the future 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 mechanism by which like a hospital or a medical center is incentivized to improve their their diagnostic rates their 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 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 was some of the technologies like artificial intelligence being used as a potential aid in diagnosis I do think that can go a long way I also think that there has been this recognition perhaps post-covid pandemic 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 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 yeah I think we're all along we'd all agree with that um feels like good place for us to come full circle I always wrap with the same question which is in this container of a good life project if I offer up the phrase to live a good life what comes up 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. Thank you so let's talk about some of the big a ha's and actionable takeaways from this conversation. A few things I want to carry from this one first the permission to be ill-peace 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 loan 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 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 and notice 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 pass 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 Strengths Finders 2.0 to How Full Is Your Bucket 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 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 definitely then 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 Jonathan Fields editing helped by Troy Young, Chris Carter crafted our theme music and if you haven't already follow us wherever you get your podcast so you never miss a conversation until next time I'm Jonathan Fields signing off for Good Life Project music when considering care for a loved one with dementia you want peace of mind that they'll be in the very best hands with care delivered by expert teams and supported to live life happily comfortably in a dedicated environment that supports independence you can expect all of this and more with Southern Down Care Home you're invited to our open day on Saturday the 20th of June to take a look around our home and discuss what support you need visit barchester.com slash open day for more information hello it's Giovanna Fletcher from happy mum and I'm sponsored by Motoway the easy way to sell your car for a great price as a mum anything that helps take a little bit of mental load off is a win and Motoway really does that you can get an instant valuation add your car details straight from your phone and then it goes into their daily online auction where over 8000 verified dealers all compete to give you their best offer it just takes the stress out of something that can feel a bit daunting you don't need to know all the ins and outs Motoway pretty much walks you through it step by step and on average sellers get 1600 pounds plus more than a part exchange claims apply see motoway.co.uk forward slash claims find out what your car is worth today at motoway.co.uk and if you sell your car on motoway this June you could even be in with a chance of winning a BMW 1 series worth over 40 000 pounds chase is the digital bank that gives your savings a boost anytime anywhere even when i'm visiting family you bet you could earn 4.5% aer variable including a 2.25% aer fixed boost for 12 months right now with chase you could be boosting your way to our dream holiday exactly search chase boosted saver 18 plus uk residents available to new chase current account customers for their first 31 days 4.41% gross interest paid monthly eligibility and terms apply