Chapter 1: What is the main topic discussed in this episode?
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.
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, Alexander Sifilin, 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 stuck me cold.
Chapter 2: What is the diagnosis crisis and why does it matter?
We'll jump right into that after this short break. 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 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?
Chapter 3: How does a diagnosis provide emotional and social validation?
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 pneumonia, 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 your diagnosis is the most important piece of medical information that a person can receive because it informs everything else. Without a diagnosis, it's hard to get the best treatment for your health condition. It's hard to get insurance coverage for treatments or 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 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.
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Chapter 4: What lessons can we learn from the Proctor family's experience?
You 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 could 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?
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 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 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.
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Chapter 5: How do the best diagnosticians approach their work?
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... It was sort of like no one could fully understand the pain that she was in because nobody had sort of affirmed, yes, there's something wrong.
There's actually torn cartilage, which is very painful and can only be resolved through this surgical procedure. But up until that point, it was like, oh, well, the physician is saying you just need to sleep with that pillow between your legs or whatever. And it was this diagnosis that was like, no, I was actually suffering from something very painful for a very long time.
And this is and this is why.
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 my mind immediately goes through, why didn't somebody do that one definitive thing years earlier that would have clearly shown, okay, so 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's it makes sense. Like she's a young she's younger than me.
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Chapter 6: What role does AI play in improving patient interactions?
She's in her early 30s. And I think as a physician, you hear someone that young suffering from hip pain. And it's like it's unlikely that it's something very serious. And I do think that there are there's good reasons to not want to go overboard. And the first time that you see a patient to say you need to get a CT scan, you need to get an 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 that 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 way too quickly or way too early and often the cost that's associated with them. can be incredibly high. So there's this delicate balancing act I would imagine practitioners are doing.
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, insurance probably is not going to cover a whole bunch of that. If they're within a hospital or administration, it's going to look at those things and say, this is actually not the way that we do things.
So imagine the practitioner themselves are also doing a really delicate dance here.
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Chapter 7: What should you do when multiple doctors can't find an answer?
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. 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 Thank you so much. 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. 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.
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, you know, not just in an emergency room setting, but you saw someone and they came to you, you know, 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 reprovide information again and again.
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Chapter 8: How can patients advocate for themselves in the medical system?
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.
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 a bit, because I think it's really 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 frozen. 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 Program. And they have what it has turned out to be an incredibly rare case 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 raising up sensation.
But this was a totally novel disease discovery. And, you know, 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, if 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,
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