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. 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:

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 | Instagram | Episode Transcript

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!

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photo credit: Amir Hamja

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Episode Transcript:

Alexandra Sifferlin: [00:00:00] 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.

Jonathan Fields: [00:00:20] 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, and I want to start with a phrase that stopped me cold. We’ll jump right into that after this short break.

Jonathan Fields: [00:01:13] So we’re having this this conversation, I think a really interesting time, um, were 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. Um, 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? Um, you talk about something that you describe as a diagnosis crisis. What, what do you actually mean by that? And why does it matter so much now?

Alexandra Sifferlin: [00:01:56] 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. 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.

Jonathan Fields: [00:03:43] Yeah, I mean, you just shared the stat that the typical person, I guess, will have at least one misdiagnosis or missed diagnosis, um, 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 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, um, this can be really devastating. I mean, it’s, 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?

Alexandra Sifferlin: [00:04:30] I love there’s this sociologist Sarah Needleman, who says that a diagnosis gives you permission to be ill. And basically 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 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, etc.. 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. 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.

Alexandra Sifferlin: [00:06:02] 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 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 and this is why.

Jonathan Fields: [00:07:07] Yeah. I mean, when you hear a story like that, um, 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 to 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, um, what’s happening in medicine that stops those things from happening?

Alexandra Sifferlin: [00:07:36] 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, um, 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 an MRI. This stuff is very expensive. Um, 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 for too long unresolved.

Jonathan Fields: [00:08:47] Yeah. I mean, you brought up a couple really, I think, important issues too. One is on the one hand, you’re sitting there saying, why didn’t somebody just order that scanner, that 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, um, going to really expensive diagnostic procedures, um, without them being warranted or rate too quickly or way too early. And often the cost that’s associated with them, um, can be incredibly high. So there’s this delicate balancing act 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, um, 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?

Alexandra Sifferlin: [00:09:47] Yes, definitely. And I think, you know, one thing I try to get across in my book is that, um, 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. Clinicians in general are trying. But what’s hard is there are still a lot of missed cases or there’s 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.

Jonathan Fields: [00:11:04] Yeah. I mean, and if you’re an er doc, right. And somebody comes in, you may never see them again. Totally.

Alexandra Sifferlin: [00:11:10] Yes. And 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 hearing 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 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 re provide information again and again. Um, and it is, 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. Um, so it’s, it can be a very frustrating experience on both ends.

Jonathan Fields: [00:12:24] Yeah. And we’ll be right back after a word from our sponsors. You anchor 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 because I think it’s really it illustrates a lot.

Alexandra Sifferlin: [00:12:42] 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 5 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 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 first diagnosed case of the Undiagnosed Diseases program. 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 causing the 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.

Jonathan Fields: [00:14:38] Yeah. I mean, it’s, um, 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, there’s probably not going to be much, if 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 seeing. Like, we’re going to name this now. Um, I mean, it’s interesting that that there would be an entire center dedicated to this at this point is I’m 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.

Alexandra Sifferlin: [00:15:33] 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 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. Um and so their case by looking at um 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 the broader medical knowledge of disease.

Jonathan Fields: [00:17:17] 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.

Alexandra Sifferlin: [00:17:34] Mhm.

Jonathan Fields: [00:17:34] Well, how does diagnosis actually happen in the real world versus what we imagine?

Alexandra Sifferlin: [00:17:39] 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 Holmes 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. Um, 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. Uh, you know, what, what are the symptoms of heart failure? What are the symptoms of pneumonia? What does a shingles, 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 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.

Alexandra Sifferlin: [00:19:21] 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, 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. Um, 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. Um, 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 the different permutations of a condition.

Jonathan Fields: [00:20:36] Yeah. I would imagine, you know, on the one hand it’s a little bit mysterious, even mystical. Um, 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 like, this set of things is most likely to be this set of, you know, like of, 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 physicians ability to gather the right information, you know, and you describe sometimes. Okay, so you ask a lot of questions, right? Um, 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, um, 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. Um, and as a kid, you know, that was kind of like, how can that even be possible? We also had probably 20, 30 more minutes with a doctor when I was younger. But, um, what, 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, um, 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.

Alexandra Sifferlin: [00:22:08] Yes. So there it is very interesting because I think the, 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, uh, 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 toward 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 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.

Alexandra Sifferlin: [00:24:02] 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 Doctor 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, um, 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 that much time at the bedside, that these kinds of skills that are important to diagnosis could be lost.

Jonathan Fields: [00:25:15] 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. Um, and 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? How does it end? But then when you’re sitting across from somebody, um, 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 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, you’re going to pick up stuff that would probably be just critically important. I had a really interesting current experience. I’m 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 taker running in the background? Mhm. Um, so I can really pay attention to you. And I was like, sure, sounds great. And they just sat there and we, 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 in a level that it had been years since I felt that. I’m wondering if you’ve if you sort of explored that, that shift at all.

Alexandra Sifferlin: [00:26:44] Absolutely. I’m very interested in this idea that artificial intelligence could actually help make aspects of medicine more human. Yeah, 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. 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.

Jonathan Fields: [00:27:57] Yeah, I mean, it just I just know from personal experience, it felt better to me. You know, 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, 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?

Alexandra Sifferlin: [00:28:32] 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 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 an 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.

Jonathan Fields: [00:29:42] 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 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? Um, when you’re trying to diagnose, you know, like the further you get into your career.

Alexandra Sifferlin: [00:30:32] 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. Um, for, for instance, there’s this physician in the book, doctor Gurpreet Dhaliwal, 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? 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 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.

Alexandra Sifferlin: [00:31:51] 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 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.

Jonathan Fields: [00:33:05] I mean, it 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 and brainstorming together and trying to figure it all out. Um, I often wonder why that isn’t just a more common model.

Alexandra Sifferlin: [00:33:29] 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.

Jonathan Fields: [00:33:35] Yeah.

Alexandra Sifferlin: [00:33:36] Um, 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?

Jonathan Fields: [00:34:22] Yeah. And we’ll be right back after a word from our sponsors. And when you take somebody, um, 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 and futility, it’s it’s got to just pile on a completely different level.

Alexandra Sifferlin: [00:34:59] I think it’s incredibly frustrating and isolating and scary. Um, 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, 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 going to try. Here’s what else we’re going to 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, 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, 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.

Jonathan Fields: [00:37:21] Yeah. And I would imagine also for the physician as well, it’s probably incredibly frustrating for them too.

Alexandra Sifferlin: [00:37:31] Oh for sure.

Jonathan Fields: [00:37:32] 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 a, you know, a doctor, um, 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, to be on that side of it too.

Alexandra Sifferlin: [00:37:53] 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, 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 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 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 where medically unexplained and then and they could have a sort of positive, more holistic checkup. Um, 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.

Jonathan Fields: [00:39:29] Yeah. I mean, I would imagine it 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.

Alexandra Sifferlin: [00:40:19] Mhm.

Jonathan Fields: [00:40:19] 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 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?

Alexandra Sifferlin: [00:40:57] 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, um, 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.

Alexandra Sifferlin: [00:42:32] Ms.. And that was just, you know, yet another example of, oh, you know, viruses can cause this cascade of health effects that we 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. And before that you might not really have 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. Um, and to hopefully keep a more open mind about those kinds of situations.

Jonathan Fields: [00:43:45] Yeah. I mean, I feel like we’re in this moment where on the one hand, so many of us, when, 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, 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. 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 such a delicate dance. I feel like.

Alexandra Sifferlin: [00:45:04] 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.

Jonathan Fields: [00:46:49] No, I think it’d be incredible. And then, of course, we have to talk a little bit about AI in 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 a nurse practitioner who 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? Um, and then the more if, if you are somebody where you’re not getting helped, um, 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 that maybe they weren’t even thinking about or exploring. Um, and at the same time, there are risks.

Alexandra Sifferlin: [00:47:42] 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 are 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 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 chat bots 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.

Alexandra Sifferlin: [00:49:34] 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. Um, 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. Uh, 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 the medical community, but they’re kind of relying on similar technology. You know, physicians are really liking them and are saying like, I’m 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. Um, 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.

Jonathan Fields: [00:51:15] Yeah. I mean, I feel like we’re just, we’re, it’s 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. Um, are you hopeful about the future?

Alexandra Sifferlin: [00:51:34] 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 my reporting, because 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 a sort of systematic way. And, and 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 with 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’s that desire to improve. And I do think that, you know, science is rapidly is rapidly moving forward, and hopefully things will get better.

Jonathan Fields: [00:54:07] Yeah, I think we’re all along we’d all agree with that. Um, 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.

Alexandra Sifferlin: [00:54:20] 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 good way to live. And I think it’s important to try to have that kind of influence to change what you can.

Jonathan Fields: [00:54:57] 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. 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 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 siloed, that’s worth naming a 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 notice this week whether 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 paths, or whether you’ve just run out of the ones that felt easy.

Jonathan Fields: [00:56:15] And hey, before you go next week, I am sitting down with Tom Rath, whose books from Strengthsfinder 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 looking 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 Lindsey Fox and me, Jonathan Fields. Editing help by Troy Young. Kris 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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