1 00:00:43,880 --> 00:00:47,279 Speaker 1: Hi, I'm Aaron Welsh and this is This Podcast Will 2 00:00:47,360 --> 00:00:50,360 Speaker 1: Kill You. You're listening to the latest episode in the 3 00:00:50,440 --> 00:00:54,040 Speaker 1: tp w k Y book Club series. This is the 4 00:00:54,080 --> 00:00:56,680 Speaker 1: series where I get to chat with authors of popular 5 00:00:56,720 --> 00:01:00,200 Speaker 1: science and medicine books about their latest work and ask 6 00:01:00,200 --> 00:01:03,440 Speaker 1: them a bunch of questions about what inspires them, what 7 00:01:03,600 --> 00:01:06,440 Speaker 1: lessons we can learn, and what the future might hold. 8 00:01:06,920 --> 00:01:10,759 Speaker 1: We've covered some incredibly wide ranging topics. There's truly something 9 00:01:10,760 --> 00:01:13,080 Speaker 1: for everyone out there. If you'd like to take a 10 00:01:13,120 --> 00:01:15,480 Speaker 1: look at all of the books we've featured in the past, 11 00:01:15,560 --> 00:01:17,559 Speaker 1: as well as get a sneak peek into the books 12 00:01:17,560 --> 00:01:20,520 Speaker 1: that we'll be featuring in upcoming episodes, head over to 13 00:01:20,600 --> 00:01:23,880 Speaker 1: our website This Podcast will Kill You dot com. There, 14 00:01:24,040 --> 00:01:26,280 Speaker 1: under the extras tab, you'll find a link to our 15 00:01:26,319 --> 00:01:29,640 Speaker 1: bookshop dot org affiliate page. Clicking on that, we'll get 16 00:01:29,640 --> 00:01:34,080 Speaker 1: you to a bunch of TPWKY related book lists, including 17 00:01:34,200 --> 00:01:37,240 Speaker 1: one for this book club and one for the Kids 18 00:01:37,319 --> 00:01:40,440 Speaker 1: Book Club, which Aaron Updike posts on our socials. So 19 00:01:40,480 --> 00:01:42,880 Speaker 1: if you're not already following us there, you should be. 20 00:01:43,280 --> 00:01:45,959 Speaker 1: I'm always updating these lists, so be sure to check 21 00:01:46,000 --> 00:01:50,160 Speaker 1: in regularly. If you have book suggestions, topic suggestions, a 22 00:01:50,160 --> 00:01:52,800 Speaker 1: first hand account, or anything else you'd like to share. 23 00:01:53,160 --> 00:01:54,920 Speaker 1: The best way to get in touch is through the 24 00:01:54,960 --> 00:01:58,000 Speaker 1: contact us form on our website or through the first 25 00:01:58,000 --> 00:02:01,880 Speaker 1: hand account form. Two last things before I can introduce 26 00:02:02,040 --> 00:02:04,880 Speaker 1: this week's book, and that is to please rate, review, 27 00:02:04,960 --> 00:02:05,720 Speaker 1: and subscribe. 28 00:02:05,880 --> 00:02:06,680 Speaker 2: It's a big help. 29 00:02:07,200 --> 00:02:10,280 Speaker 1: And finally, you can now find full videos of most 30 00:02:10,320 --> 00:02:13,760 Speaker 1: of our newest episodes on YouTube. Make sure you're subscribed 31 00:02:13,760 --> 00:02:16,720 Speaker 1: to the exactly right YouTube channel so you never miss 32 00:02:16,760 --> 00:02:21,359 Speaker 1: a new episode drop. Every year, millions of people will 33 00:02:21,360 --> 00:02:23,799 Speaker 1: make an appointment with their doctor to try to make 34 00:02:23,840 --> 00:02:27,840 Speaker 1: sense of a set of symptoms they're experiencing. What happens 35 00:02:27,880 --> 00:02:32,560 Speaker 1: next can fall into several different categories. Number one, they 36 00:02:32,600 --> 00:02:35,800 Speaker 1: are given the correct diagnosis or start on a path 37 00:02:35,840 --> 00:02:39,480 Speaker 1: that will lead to the correct diagnosis. Number two, they 38 00:02:39,520 --> 00:02:43,440 Speaker 1: are given the wrong diagnosis, or number three, they get 39 00:02:43,480 --> 00:02:47,760 Speaker 1: no diagnosis at all, despite needing one. Most of us 40 00:02:47,840 --> 00:02:50,840 Speaker 1: experience the first option. After all, we are taught that 41 00:02:50,919 --> 00:02:54,160 Speaker 1: science and medicine have the answers, so of course that's 42 00:02:54,160 --> 00:02:56,560 Speaker 1: where we turn when we have questions about our health. 43 00:02:57,080 --> 00:03:00,280 Speaker 1: But for millions of people, that initial visit does not 44 00:03:00,360 --> 00:03:03,960 Speaker 1: result in a correct diagnosis, nor does the second or 45 00:03:04,080 --> 00:03:08,160 Speaker 1: the third. In fact, many people wait years for an answer, 46 00:03:08,639 --> 00:03:11,960 Speaker 1: years marked by the emotional and physical pain that comes 47 00:03:11,960 --> 00:03:16,280 Speaker 1: with being considered unexplainable in the eyes of medicine. The vast, 48 00:03:16,360 --> 00:03:20,440 Speaker 1: extent and profound impact of this issue has been understudied, 49 00:03:20,840 --> 00:03:24,239 Speaker 1: but this week's book seeks to correct that oversight. In 50 00:03:24,400 --> 00:03:29,040 Speaker 1: the Elusive Body, Doctor's Patients, and the Diagnosis Crisis, author 51 00:03:29,120 --> 00:03:33,720 Speaker 1: and health journalist Alexandra Siferlin offers a panoramic and personal 52 00:03:33,760 --> 00:03:37,400 Speaker 1: analysis of this issue that affects so many of us. 53 00:03:38,080 --> 00:03:41,120 Speaker 1: Her work takes her across the US, where she connects 54 00:03:41,200 --> 00:03:45,800 Speaker 1: with patients, doctors, and researchers whose lives have been defined 55 00:03:45,920 --> 00:03:49,680 Speaker 1: by the diagnosis crisis, like the family with a debilitating 56 00:03:49,720 --> 00:03:53,520 Speaker 1: condition that went undiagnosed for years until they were able 57 00:03:53,560 --> 00:03:58,560 Speaker 1: to find answers at the NIH's Undiagnosed Diseases Network, or 58 00:03:58,680 --> 00:04:01,920 Speaker 1: the doctor whose cancer was dismissed by other physicians for 59 00:04:02,160 --> 00:04:05,440 Speaker 1: years until she was finally able to get a diagnosis. 60 00:04:06,200 --> 00:04:10,760 Speaker 1: As sifrilin compassionately demonstrates, a diagnosis is more than a 61 00:04:10,760 --> 00:04:14,200 Speaker 1: note on your medical chart. It can provide a path forward, 62 00:04:14,480 --> 00:04:18,560 Speaker 1: treatment options, a supportive community, and the knowledge that you 63 00:04:18,760 --> 00:04:22,599 Speaker 1: are believed. The Elusive Body is a highly relevant and 64 00:04:22,760 --> 00:04:26,279 Speaker 1: much needed exploration of the diagnosis crisis in this country, 65 00:04:26,640 --> 00:04:29,480 Speaker 1: and I am so excited to share my conversation with 66 00:04:29,560 --> 00:04:32,520 Speaker 1: Alexandra with you all. So let's just take a quick 67 00:04:32,560 --> 00:04:59,680 Speaker 1: break here and get into things. Alexandra, thank you so 68 00:04:59,760 --> 00:05:01,800 Speaker 1: much for joining me today. Welcome to the show. 69 00:05:02,040 --> 00:05:04,520 Speaker 2: Thank you so much for having me your. 70 00:05:04,279 --> 00:05:07,680 Speaker 1: Book, The Elusive Body. It explores the mini factors that 71 00:05:07,760 --> 00:05:12,360 Speaker 1: prevent someone from receiving an accurate diagnosis, sometimes for decades. 72 00:05:12,640 --> 00:05:15,320 Speaker 1: And before we dive into what some of those individual 73 00:05:15,360 --> 00:05:18,400 Speaker 1: factors are, i'd love to hear about your journey in 74 00:05:18,480 --> 00:05:21,120 Speaker 1: writing this book, like how did you find yourself drawn 75 00:05:21,200 --> 00:05:22,560 Speaker 1: to the diagnosis crisis. 76 00:05:23,160 --> 00:05:28,360 Speaker 3: I got interested in diagnosis for both professional and personal reasons. 77 00:05:28,720 --> 00:05:33,359 Speaker 3: I was a health journalist at Time magazine, and I 78 00:05:33,600 --> 00:05:36,920 Speaker 3: was discovering that one of the things that readers were 79 00:05:37,000 --> 00:05:41,479 Speaker 3: emailing me about most often were issues related to their 80 00:05:41,560 --> 00:05:45,360 Speaker 3: own unresolved diagnostic journey. So I would hear from people 81 00:05:45,520 --> 00:05:49,080 Speaker 3: all the time basically asking me, you know you are 82 00:05:49,200 --> 00:05:53,120 Speaker 3: interviewing a lot of physicians, do you have any ideas 83 00:05:53,160 --> 00:05:55,520 Speaker 3: of someone who could help me? I have been on 84 00:05:55,760 --> 00:06:01,120 Speaker 3: diagnosed for this long and it happened frequently enough that 85 00:06:01,200 --> 00:06:04,160 Speaker 3: it felt like it was something worth looking into. I 86 00:06:04,279 --> 00:06:07,440 Speaker 3: was just curious, what is it that causes someone to 87 00:06:07,560 --> 00:06:12,320 Speaker 3: spend such a long period of time undiagnosed? And then personally, 88 00:06:12,440 --> 00:06:16,839 Speaker 3: my book is dedicated to my sister Francesca, who has 89 00:06:17,040 --> 00:06:21,400 Speaker 3: experienced a variety of undiagnosed conditions over the years, and 90 00:06:21,480 --> 00:06:25,960 Speaker 3: so I have been able to see firsthand how frustrating 91 00:06:26,200 --> 00:06:30,200 Speaker 3: and destabilizing it can be to be suffering from something 92 00:06:30,400 --> 00:06:34,159 Speaker 3: for which you have no solid answers, and so I 93 00:06:34,320 --> 00:06:39,560 Speaker 3: just became very invested in both the scientific questions and 94 00:06:39,680 --> 00:06:44,159 Speaker 3: also the personal anguish and how to resolve these things. 95 00:06:44,920 --> 00:06:51,000 Speaker 1: What results is this really thoughtful and broad ranging perspective 96 00:06:51,240 --> 00:06:55,120 Speaker 1: on this massive problem that exists not just in the 97 00:06:55,200 --> 00:06:58,800 Speaker 1: United States but around the world. And as you describe 98 00:06:58,839 --> 00:07:02,280 Speaker 1: in your book, millions of people live without a diagnosis, 99 00:07:02,360 --> 00:07:05,320 Speaker 1: sometimes for decades, and the consequences of that can be 100 00:07:05,360 --> 00:07:08,080 Speaker 1: extremely challenging, not just from a health standpoint, you know, 101 00:07:08,120 --> 00:07:11,560 Speaker 1: as a health deteriorates without any treatment or solution, but 102 00:07:11,640 --> 00:07:16,000 Speaker 1: also emotionally and financially. And starting with the basics, though, 103 00:07:16,480 --> 00:07:20,440 Speaker 1: what is a diagnosis and how does receiving a correct 104 00:07:20,520 --> 00:07:22,440 Speaker 1: diagnosis what does that give someone? 105 00:07:23,080 --> 00:07:26,760 Speaker 3: So at its most basic level, a diagnosis is basically 106 00:07:26,800 --> 00:07:30,720 Speaker 3: an answer to what ails us. It's the identification of 107 00:07:30,920 --> 00:07:35,640 Speaker 3: a disease or condition that explains the symptoms that a 108 00:07:35,680 --> 00:07:40,520 Speaker 3: patient is experiencing. But a diagnosis goes so much more 109 00:07:40,720 --> 00:07:44,600 Speaker 3: beyond that, because a diagnosis is also really the beginning, 110 00:07:44,840 --> 00:07:49,920 Speaker 3: ideally of a resolution. So with a diagnosis, a physician 111 00:07:50,160 --> 00:07:53,440 Speaker 3: can then build a treatment plan that will hopefully provide 112 00:07:53,600 --> 00:07:58,360 Speaker 3: relief for their patient. A diagnosis is crucial for getting 113 00:07:58,400 --> 00:08:02,920 Speaker 3: insurance coverage for said treatment plan or any follow up appointments, 114 00:08:03,120 --> 00:08:07,000 Speaker 3: et cetera. A diagnosis is important if let's say you 115 00:08:07,080 --> 00:08:10,360 Speaker 3: have something rare and you want to be in an 116 00:08:10,400 --> 00:08:14,280 Speaker 3: experimental clinical trial, you need a diagnosis for that. A 117 00:08:14,320 --> 00:08:18,600 Speaker 3: diagnosis can also create access to a community if there's 118 00:08:18,720 --> 00:08:22,840 Speaker 3: other people who are suffering from the same condition. And 119 00:08:22,920 --> 00:08:28,000 Speaker 3: then I also think diagnosis can provide reassurance to people 120 00:08:28,160 --> 00:08:32,640 Speaker 3: that they are experiencing something that is real, and it 121 00:08:32,679 --> 00:08:36,560 Speaker 3: can provide a kind of coherence to their experience that 122 00:08:36,760 --> 00:08:40,360 Speaker 3: sometimes has felt very unsettling or chaotic. 123 00:08:41,120 --> 00:08:44,360 Speaker 1: And yet some people never receive that clear answer or 124 00:08:44,720 --> 00:08:47,800 Speaker 1: kind of just linger in that liminal space of this 125 00:08:47,920 --> 00:08:51,960 Speaker 1: like gray area for such a long time, and there 126 00:08:51,960 --> 00:08:54,600 Speaker 1: are many different ways that this can happen in terms 127 00:08:54,640 --> 00:08:58,240 Speaker 1: of like diagnostic error, Can you tell me about the 128 00:08:58,280 --> 00:09:01,960 Speaker 1: different types of diagnosed stick error and how common they 129 00:09:02,000 --> 00:09:04,160 Speaker 1: are just across the board in the United States, Like 130 00:09:04,240 --> 00:09:07,640 Speaker 1: how many people will receive a diagnostic error each year 131 00:09:07,760 --> 00:09:10,320 Speaker 1: or within their lifetimes. It's a startling number. 132 00:09:10,679 --> 00:09:17,000 Speaker 3: Yes, yes, definitely. So in twenty fifteen, the National Academies 133 00:09:17,040 --> 00:09:20,720 Speaker 3: of Sciences, Engineering, and Medicine set out to do a 134 00:09:20,840 --> 00:09:23,520 Speaker 3: really comprehensive report to sort of try to wrap their 135 00:09:23,600 --> 00:09:27,080 Speaker 3: arms around diagnostic error and do their best attempt to 136 00:09:27,280 --> 00:09:31,000 Speaker 3: estimate how great an issue this was and try to 137 00:09:31,040 --> 00:09:35,000 Speaker 3: understand it better. And basically that report concluded that most 138 00:09:35,080 --> 00:09:39,599 Speaker 3: people will experience a diagnostic error in their lifetime, sometimes 139 00:09:39,640 --> 00:09:44,720 Speaker 3: with devastating consequences, whether that's disability or even death. Some 140 00:09:45,040 --> 00:09:49,720 Speaker 3: conservative estimates suggest that five percent of American adults experience 141 00:09:49,760 --> 00:09:53,760 Speaker 3: a diagnostic error every year, So that's something like ten 142 00:09:53,840 --> 00:09:57,839 Speaker 3: to thirteen million Americans. That is something that many people 143 00:09:57,880 --> 00:10:00,640 Speaker 3: call a very conservative estimate. So you're talking about tens 144 00:10:00,640 --> 00:10:04,839 Speaker 3: of millions of people among that group of diagnostic error. 145 00:10:05,000 --> 00:10:09,640 Speaker 3: Typically researchers look at diagnostic er in three buckets. More 146 00:10:09,720 --> 00:10:15,040 Speaker 3: or less, there's a wrong diagnosis, so the answer is incorrect. 147 00:10:15,640 --> 00:10:18,720 Speaker 3: You had heart failure, but you were diagnosed with chronic bronchitis. 148 00:10:19,720 --> 00:10:23,959 Speaker 3: There's delayed diagnosis, so a diagnosis took longer than it 149 00:10:24,000 --> 00:10:28,800 Speaker 3: should have, so perhaps a delayed diagnosis of cancer. And 150 00:10:28,840 --> 00:10:33,640 Speaker 3: then there's missed diagnosis, which is someone has never diagnosed, 151 00:10:34,240 --> 00:10:38,360 Speaker 3: they go on living undiagnosed, and so altogether those are 152 00:10:38,360 --> 00:10:41,160 Speaker 3: sort of the three buckets that we tend to look 153 00:10:41,200 --> 00:10:42,679 Speaker 3: at when it comes to diagnostic air. 154 00:10:43,320 --> 00:10:46,520 Speaker 1: When it comes to delayed diagnosis, what is is there 155 00:10:46,600 --> 00:10:51,120 Speaker 1: like a bound around what is an acceptable time to diagnosis? 156 00:10:51,160 --> 00:10:53,640 Speaker 1: You know, when when does a diagnosis become delayed? 157 00:10:54,400 --> 00:10:58,400 Speaker 3: This one is a little bit complicated because medicine is 158 00:10:58,440 --> 00:11:03,600 Speaker 3: inherently uncertain and no one expects that something very rare, 159 00:11:04,000 --> 00:11:08,920 Speaker 3: like a very rare cancer, would be diagnosed immediately. But 160 00:11:09,480 --> 00:11:12,480 Speaker 3: what they sort of have determined is like, let's say 161 00:11:12,960 --> 00:11:15,400 Speaker 3: a person comes in and you look back on their 162 00:11:15,400 --> 00:11:18,960 Speaker 3: medical history and they were complaining about this cyste in 163 00:11:18,960 --> 00:11:21,240 Speaker 3: their neck for years and years and years and there 164 00:11:21,280 --> 00:11:23,880 Speaker 3: was never any follow up, and then you find out 165 00:11:23,960 --> 00:11:27,760 Speaker 3: it's cancer and it's stage four, and that is sort 166 00:11:27,800 --> 00:11:31,320 Speaker 3: of what would be determined as a delayed diagnosis. It 167 00:11:31,440 --> 00:11:36,440 Speaker 3: was something that generally medicine agrees could have been diagnosed earlier. 168 00:11:37,160 --> 00:11:41,440 Speaker 3: But you know, it is complicated, like sometimes a person 169 00:11:41,480 --> 00:11:46,280 Speaker 3: comes in complaining of symptoms and there's nothing really coming 170 00:11:46,360 --> 00:11:51,320 Speaker 3: up on tests yet, but as years go by, perhaps 171 00:11:51,440 --> 00:11:55,640 Speaker 3: it does develop into something more serious. And so there 172 00:11:55,679 --> 00:12:00,520 Speaker 3: are some understandable questions around was that initial visit error 173 00:12:00,600 --> 00:12:03,280 Speaker 3: or is that just sort of the practice, the standard 174 00:12:03,320 --> 00:12:07,280 Speaker 3: practice of medicine. So there's some gray area for sure, 175 00:12:07,640 --> 00:12:09,960 Speaker 3: but I think it can kind of be some of 176 00:12:10,480 --> 00:12:12,160 Speaker 3: a thing where you sort of know it when you 177 00:12:12,200 --> 00:12:14,760 Speaker 3: see it, like when you find out this was cancer, 178 00:12:14,800 --> 00:12:17,440 Speaker 3: and then there's a few people in my book who 179 00:12:17,480 --> 00:12:22,000 Speaker 3: had this experience. I think it becomes very frustrating when 180 00:12:22,640 --> 00:12:25,680 Speaker 3: you've gone to the doctor again and again with the 181 00:12:25,760 --> 00:12:28,400 Speaker 3: same complaints and it turns out it was something more 182 00:12:28,480 --> 00:12:30,280 Speaker 3: serious than you were told. 183 00:12:31,240 --> 00:12:33,480 Speaker 1: Let's take a quick break, and when we get back, 184 00:12:33,640 --> 00:12:53,240 Speaker 1: there's still so much to discuss. Welcome back everyone. I've 185 00:12:53,240 --> 00:12:56,720 Speaker 1: been chatting with Alexandra Sifferlin about her book The Elusive 186 00:12:56,760 --> 00:13:01,040 Speaker 1: Body Patients doctors and the diagnosis crisis. Let's get back 187 00:13:01,040 --> 00:13:04,079 Speaker 1: into things. I want to get into some of the 188 00:13:04,480 --> 00:13:08,880 Speaker 1: information or the tools that we use to make a diagnosis, 189 00:13:09,480 --> 00:13:11,800 Speaker 1: like how much or how little do we have to 190 00:13:11,880 --> 00:13:16,160 Speaker 1: know about the mechanisms of a disease or the pathogenesis 191 00:13:16,160 --> 00:13:20,560 Speaker 1: that this disease takes, and what role does technology play 192 00:13:20,600 --> 00:13:23,240 Speaker 1: in our ability to more accurately diagnose someone. 193 00:13:23,960 --> 00:13:27,000 Speaker 3: So when I was doing the reporting of this book, 194 00:13:27,040 --> 00:13:30,040 Speaker 3: I was so interested in this question every time I 195 00:13:30,040 --> 00:13:33,239 Speaker 3: would speak to a physician or a clinician who diagnoses, 196 00:13:33,320 --> 00:13:37,080 Speaker 3: and asking them, what exactly are you doing and what 197 00:13:37,240 --> 00:13:40,600 Speaker 3: is going on in your brain? And it was kind 198 00:13:40,600 --> 00:13:44,320 Speaker 3: of fun because I think it almost becomes. 199 00:13:44,000 --> 00:13:45,200 Speaker 2: Innate in some ways. 200 00:13:45,440 --> 00:13:49,720 Speaker 3: A physician goes through their medical school, they memorize so 201 00:13:49,880 --> 00:13:52,079 Speaker 3: many things about the body and how it's supposed to 202 00:13:52,120 --> 00:13:55,160 Speaker 3: work when it's healthy, in the various ways that that 203 00:13:55,200 --> 00:13:57,200 Speaker 3: things can go wrong, and what the body looks like 204 00:13:57,240 --> 00:14:00,880 Speaker 3: when it's sick, and you're memorizing you know, specific conditions, 205 00:14:00,920 --> 00:14:03,560 Speaker 3: and you're learning about all these different symptoms and what 206 00:14:03,720 --> 00:14:06,000 Speaker 3: symptoms could be this disease over that one. 207 00:14:06,679 --> 00:14:07,559 Speaker 2: But at a very. 208 00:14:07,400 --> 00:14:11,120 Speaker 3: Basic level, when a doctor is looking to diagnose they're 209 00:14:11,120 --> 00:14:16,079 Speaker 3: looking at a few basic things. First, a person's symptoms 210 00:14:16,640 --> 00:14:19,960 Speaker 3: to come in and you say, I am experiencing like 211 00:14:20,000 --> 00:14:23,960 Speaker 3: a really severe itching pain on my neck. Then they 212 00:14:24,040 --> 00:14:27,840 Speaker 3: are looking for signs, so does that person have a 213 00:14:28,000 --> 00:14:33,040 Speaker 3: rash that is corresponding with those symptoms? And then a 214 00:14:33,120 --> 00:14:38,280 Speaker 3: medical history, so both a past medical history for instance, 215 00:14:38,400 --> 00:14:42,320 Speaker 3: has this person experienced chicken pox in when they were younger? 216 00:14:43,040 --> 00:14:46,280 Speaker 3: And also a recent medical history, what age are they, 217 00:14:46,440 --> 00:14:50,400 Speaker 3: are they under severe stress? And then with all of 218 00:14:50,440 --> 00:14:55,000 Speaker 3: those things together, a physician starts thinking about what is 219 00:14:55,040 --> 00:14:58,760 Speaker 3: the most likely case here. You know, someone experiencing like 220 00:14:58,800 --> 00:15:01,280 Speaker 3: a burning tangling and they have a clear rash and 221 00:15:01,320 --> 00:15:03,520 Speaker 3: they had chicken pox when they were younger, like that 222 00:15:03,560 --> 00:15:06,200 Speaker 3: could be shingles, And that's something that a physician could 223 00:15:06,200 --> 00:15:09,280 Speaker 3: figure out very quickly because they would recognize what a 224 00:15:09,280 --> 00:15:12,560 Speaker 3: shingle rash looks like, they would recognize that this person 225 00:15:12,640 --> 00:15:15,800 Speaker 3: has had this particular medical history, and it all sort 226 00:15:15,840 --> 00:15:20,720 Speaker 3: of comes together where it gets more complicated, as if 227 00:15:20,760 --> 00:15:23,240 Speaker 3: it's something that can't be resolved that quickly. It's not 228 00:15:23,320 --> 00:15:26,960 Speaker 3: an immediate I recognize this, I've seen this a thousand 229 00:15:26,960 --> 00:15:31,000 Speaker 3: times before in my office. Or it's something that shares 230 00:15:31,040 --> 00:15:34,080 Speaker 3: a lot of symptoms with other things. So many parents 231 00:15:34,160 --> 00:15:37,120 Speaker 3: might have the experience of going to the pediatrician with 232 00:15:37,240 --> 00:15:40,600 Speaker 3: a sick kid, and perhaps they want to do a 233 00:15:40,680 --> 00:15:44,520 Speaker 3: test to know does the child have COVID, do they 234 00:15:44,560 --> 00:15:46,120 Speaker 3: have the flu, do they have RSV? 235 00:15:47,200 --> 00:15:49,240 Speaker 2: So then you can do an actual. 236 00:15:48,960 --> 00:15:53,680 Speaker 3: Diagnostic test like a swab, And then if there's need 237 00:15:53,680 --> 00:15:56,880 Speaker 3: for even further interrogation, there's then a variety of different 238 00:15:56,920 --> 00:15:58,760 Speaker 3: kinds of tests, like are you in a situation where 239 00:15:58,800 --> 00:16:00,480 Speaker 3: you need to be bringing in an old culture sound, 240 00:16:00,520 --> 00:16:03,240 Speaker 3: you need to peer inside the body, you know. So 241 00:16:03,840 --> 00:16:07,360 Speaker 3: there's some things that don't require very many tools at 242 00:16:07,360 --> 00:16:10,440 Speaker 3: all and just rely on a physician's medical knowledge and 243 00:16:10,520 --> 00:16:15,200 Speaker 3: experience seeing so many patient cases over time, and then 244 00:16:15,280 --> 00:16:19,800 Speaker 3: some things that will require more investigation and deeper testing 245 00:16:19,880 --> 00:16:20,640 Speaker 3: and more tools. 246 00:16:21,480 --> 00:16:23,720 Speaker 1: At this point in modern medicine, I mean, we have 247 00:16:24,040 --> 00:16:26,680 Speaker 1: such a wide range of tools in our diagnostic kit, 248 00:16:26,760 --> 00:16:31,040 Speaker 1: more than of course ever in history. We've got sequencing, 249 00:16:31,120 --> 00:16:34,920 Speaker 1: blood tests, advanced imaging, and so many more that probably 250 00:16:34,920 --> 00:16:37,480 Speaker 1: exist that I don't even know about. And many of 251 00:16:37,520 --> 00:16:41,000 Speaker 1: these technologies have allowed us to make more precise diagnoses. 252 00:16:41,440 --> 00:16:44,440 Speaker 1: But as you say, the diagnostic journey pretty much always 253 00:16:44,440 --> 00:16:48,640 Speaker 1: starts in the exam room with a physical exam. I 254 00:16:48,680 --> 00:16:50,600 Speaker 1: loved the part in your book when you talk about 255 00:16:50,640 --> 00:16:53,640 Speaker 1: the history of the physical exam and why it's such 256 00:16:53,640 --> 00:16:58,560 Speaker 1: a foundational part of this process, and particularly how physical 257 00:16:58,600 --> 00:17:02,240 Speaker 1: exams are trained or taught in different countries. I was 258 00:17:02,240 --> 00:17:03,880 Speaker 1: hoping you could just tell me a little bit more 259 00:17:04,000 --> 00:17:05,560 Speaker 1: about the physical exam. 260 00:17:06,200 --> 00:17:09,000 Speaker 2: Yes, so I'm glad you liked that part of the book. 261 00:17:09,040 --> 00:17:11,159 Speaker 3: So it was one of it was most interesting to 262 00:17:11,160 --> 00:17:12,840 Speaker 3: me because I got to do a lot of looking 263 00:17:12,880 --> 00:17:16,399 Speaker 3: back at history. But you know, the physical exam is 264 00:17:16,400 --> 00:17:20,400 Speaker 3: so important because it is this beginning, as you said, 265 00:17:20,440 --> 00:17:23,159 Speaker 3: the beginning of the diagnosis, and it really just starts 266 00:17:23,160 --> 00:17:26,520 Speaker 3: with observation, which is sort of one of the oldest 267 00:17:26,840 --> 00:17:30,360 Speaker 3: ways to do medicine. If you look back at sort 268 00:17:30,400 --> 00:17:33,920 Speaker 3: of ancient medicine, physicians were really just relying on their 269 00:17:33,960 --> 00:17:37,760 Speaker 3: own senses, what does the patient look like, what am 270 00:17:37,800 --> 00:17:41,640 Speaker 3: I hearing when they're coughing, and sort of making some 271 00:17:42,320 --> 00:17:46,399 Speaker 3: assumptions there. And what's kind of amazing is that that 272 00:17:46,520 --> 00:17:49,920 Speaker 3: is still where it begins. You know, you still enter 273 00:17:50,480 --> 00:17:54,480 Speaker 3: a doctor's office and you share symptoms, and your doctor 274 00:17:54,800 --> 00:17:59,879 Speaker 3: is observing you, sometimes without any tools, often with like 275 00:18:00,040 --> 00:18:02,920 Speaker 3: a stethoscope or something like that. But it's kind of 276 00:18:02,960 --> 00:18:07,479 Speaker 3: amazing that this process of just seeing the person in 277 00:18:07,480 --> 00:18:10,760 Speaker 3: front of you and really listening to them, both listening 278 00:18:10,760 --> 00:18:13,359 Speaker 3: to their actual the sounds of their body, but also 279 00:18:13,440 --> 00:18:16,320 Speaker 3: just listening to what they're telling you are so crucial. 280 00:18:16,680 --> 00:18:19,399 Speaker 3: And even as you say, you know, today we have 281 00:18:19,560 --> 00:18:24,600 Speaker 3: so many different tools for diagnosing, but you still need 282 00:18:24,680 --> 00:18:28,240 Speaker 3: to have that period of just observation and physical exam 283 00:18:28,320 --> 00:18:33,080 Speaker 3: to even decide what tools make sense to bring in 284 00:18:33,160 --> 00:18:35,320 Speaker 3: at this point at all, and to be able to 285 00:18:35,600 --> 00:18:39,960 Speaker 3: have that clinical judgment of basically what to do next. 286 00:18:40,560 --> 00:18:45,080 Speaker 1: And this clinical judgment is something that physicians gain not 287 00:18:45,160 --> 00:18:48,560 Speaker 1: just in their training, but through years and years of experience. 288 00:18:48,680 --> 00:18:52,200 Speaker 1: And I was really struck by the differences in training 289 00:18:52,320 --> 00:18:55,639 Speaker 1: or testing between the US and the UK for a 290 00:18:55,720 --> 00:18:58,360 Speaker 1: physical exam. Could you tell me a little bit more 291 00:18:58,400 --> 00:19:00,760 Speaker 1: about why there is such a different or what that 292 00:19:00,800 --> 00:19:04,119 Speaker 1: difference is in the training for a physical exam and 293 00:19:04,160 --> 00:19:06,879 Speaker 1: what impact you think it has on our ability to 294 00:19:06,960 --> 00:19:08,080 Speaker 1: make diagnoses. 295 00:19:08,720 --> 00:19:12,160 Speaker 3: You know, physicians everywhere learn a physical exam, but what's 296 00:19:12,240 --> 00:19:17,840 Speaker 3: interesting is the way that young doctors learn that exam 297 00:19:17,960 --> 00:19:20,920 Speaker 3: and are sort of tested on their ability to glean 298 00:19:20,960 --> 00:19:24,560 Speaker 3: a diagnosis from it. So the United States has a 299 00:19:24,640 --> 00:19:29,080 Speaker 3: very long tradition of young doctors following a more senior 300 00:19:29,119 --> 00:19:33,679 Speaker 3: physician through you know, rounds at the patient's bedside and 301 00:19:33,760 --> 00:19:37,919 Speaker 3: sort of watching that physician do an exam, and then 302 00:19:37,920 --> 00:19:41,239 Speaker 3: they might discuss it afterwards, and they do have that 303 00:19:41,240 --> 00:19:44,919 Speaker 3: sort of back and forth discussion. However, what's different something 304 00:19:44,960 --> 00:19:48,840 Speaker 3: that is done in the UK in medical school is 305 00:19:48,880 --> 00:19:54,199 Speaker 3: that young doctors are actually they themselves are observed doing 306 00:19:54,359 --> 00:19:58,159 Speaker 3: the physical exam by a more senior doctor and then 307 00:19:58,200 --> 00:20:03,120 Speaker 3: they are tested on it, and that test is very 308 00:20:03,400 --> 00:20:06,000 Speaker 3: crucially important to whether they get to become a physician 309 00:20:06,240 --> 00:20:10,679 Speaker 3: in the first place. So what ends up happening is 310 00:20:10,920 --> 00:20:14,080 Speaker 3: a young doctor then goes through these periods where they're 311 00:20:14,080 --> 00:20:17,640 Speaker 3: observed by someone and they're actually watching did you do 312 00:20:17,760 --> 00:20:20,760 Speaker 3: every step of the physical exam that you should have? 313 00:20:21,480 --> 00:20:25,600 Speaker 3: Is there anything that you missed, a question you didn't ask, 314 00:20:26,200 --> 00:20:28,800 Speaker 3: or the way that you held that patient's foot like 315 00:20:28,880 --> 00:20:32,000 Speaker 3: you missed something? Are you listening to the heart and 316 00:20:32,000 --> 00:20:32,760 Speaker 3: in the right way? 317 00:20:33,920 --> 00:20:35,280 Speaker 2: And they really. 318 00:20:35,000 --> 00:20:38,000 Speaker 3: Have to train for that because they will undergo an 319 00:20:38,040 --> 00:20:42,440 Speaker 3: exam in which those skills are basically rated, and it's 320 00:20:42,800 --> 00:20:45,600 Speaker 3: sort of almost like a pass fail. And if you 321 00:20:46,320 --> 00:20:49,399 Speaker 3: aren't able to get the correct diagnosis purely out of 322 00:20:49,440 --> 00:20:53,560 Speaker 3: this physical exam, you don't continue on or you sort 323 00:20:53,600 --> 00:20:56,399 Speaker 3: of you have to go back and retake it. So 324 00:20:56,880 --> 00:21:00,000 Speaker 3: what some physicians at Johns Hopkins as well as north 325 00:21:00,119 --> 00:21:02,879 Speaker 3: Western University now have done is they are trying to 326 00:21:02,920 --> 00:21:08,560 Speaker 3: find a way to incorporate that kind of testing into 327 00:21:09,520 --> 00:21:14,680 Speaker 3: a US medical school system to basically ensure that young 328 00:21:14,720 --> 00:21:19,120 Speaker 3: physicians today can still do the physical exam and can 329 00:21:19,200 --> 00:21:25,959 Speaker 3: still reach a diagnosis without necessarily needing all the tools 330 00:21:26,040 --> 00:21:28,199 Speaker 3: they do have at their disposal, and of course they 331 00:21:28,240 --> 00:21:32,879 Speaker 3: should still use them, like ultrasounds are amazing and doctors 332 00:21:32,880 --> 00:21:35,600 Speaker 3: should know how to use them, but there is this 333 00:21:35,760 --> 00:21:40,399 Speaker 3: effort to try to make sure that the sort of 334 00:21:40,440 --> 00:21:43,800 Speaker 3: skills that come from a physical exam are not lost 335 00:21:44,280 --> 00:21:47,560 Speaker 3: over time. And what they do find is you can 336 00:21:47,640 --> 00:21:50,560 Speaker 3: get very far in a diagnosis from the physical exam 337 00:21:50,640 --> 00:21:55,520 Speaker 3: still today without necessarily needing to use the technology. The 338 00:21:55,560 --> 00:22:00,560 Speaker 3: more ideal balance would be doing a physical exam, really 339 00:22:00,680 --> 00:22:05,920 Speaker 3: reaching a pretty firm hypothesis of what's happening, and then deciding, 340 00:22:06,280 --> 00:22:09,160 Speaker 3: you know, now I do think I actually need an ultrasound, 341 00:22:09,440 --> 00:22:13,480 Speaker 3: or now I do think I need these extra imaging 342 00:22:13,560 --> 00:22:16,800 Speaker 3: tests or what have you. But yeah, it's very interesting 343 00:22:16,800 --> 00:22:19,879 Speaker 3: and it's amazing to watch. If anyone has opportunity to 344 00:22:21,240 --> 00:22:24,240 Speaker 3: look up on YouTube like UK doctor doing physical Exam, 345 00:22:24,800 --> 00:22:27,560 Speaker 3: there's some pretty incredible examples. 346 00:22:28,640 --> 00:22:30,359 Speaker 1: Just to zoom in on the last one hundred and 347 00:22:30,440 --> 00:22:33,399 Speaker 1: fifty years, which is this time when our capacity for 348 00:22:33,480 --> 00:22:36,919 Speaker 1: diagnosis really grew as a result of better understanding the 349 00:22:36,960 --> 00:22:41,040 Speaker 1: mechanistic basis of disease and as we develop tools that 350 00:22:41,119 --> 00:22:45,520 Speaker 1: allow us to glimpse inside the body, how did the 351 00:22:45,600 --> 00:22:49,000 Speaker 1: diagnostic process evolve to what it was today or to 352 00:22:49,000 --> 00:22:50,520 Speaker 1: what it is today? Like what are some of the 353 00:22:50,560 --> 00:22:52,359 Speaker 1: broad patterns that you see? 354 00:22:52,800 --> 00:22:56,080 Speaker 3: Definitely, so you have like one hundred and fifty years ago, 355 00:22:57,119 --> 00:23:01,480 Speaker 3: germ theory is starting to really gain tracks, so there 356 00:23:01,560 --> 00:23:06,160 Speaker 3: is this understanding of different things that actually cause disease. 357 00:23:06,240 --> 00:23:10,200 Speaker 3: You're starting to get different kinds of imaging over time, 358 00:23:10,320 --> 00:23:12,280 Speaker 3: so you can peer inside the body and not just 359 00:23:12,400 --> 00:23:15,280 Speaker 3: observe the outside of the body. And then you're also 360 00:23:16,040 --> 00:23:20,840 Speaker 3: getting the ability to decode the body with genetic sequencing, 361 00:23:21,240 --> 00:23:28,439 Speaker 3: and so diagnosis is becoming more scientific more precise, there's 362 00:23:29,040 --> 00:23:32,560 Speaker 3: ways to basically as a single physician get a second 363 00:23:32,600 --> 00:23:37,400 Speaker 3: opinion just through different technologies. That's amazing, Like you are 364 00:23:37,400 --> 00:23:40,080 Speaker 3: more likely to be diagnosed with your rare disease today 365 00:23:40,119 --> 00:23:43,520 Speaker 3: than you were one hundred and fifty years ago. What 366 00:23:43,600 --> 00:23:48,400 Speaker 3: I think is is then challenging is for people who 367 00:23:48,880 --> 00:23:52,480 Speaker 3: don't get a diagnosis now, the experience, I think can 368 00:23:52,520 --> 00:23:57,760 Speaker 3: feel especially fraught because you feel like science has come 369 00:23:58,000 --> 00:24:01,919 Speaker 3: so far. There are so many any different tools to 370 00:24:02,040 --> 00:24:05,760 Speaker 3: use to diagnose, and so if I can't get a diagnosis, 371 00:24:05,760 --> 00:24:12,000 Speaker 3: then you really just feel so isolated, lonely, confused, scared, 372 00:24:12,320 --> 00:24:16,920 Speaker 3: and so I think what's been interesting is that diagnostic 373 00:24:17,080 --> 00:24:23,360 Speaker 3: error has existed forever, and people living undiagnosed has existed forever, 374 00:24:24,240 --> 00:24:27,000 Speaker 3: but in this moment where it's like this really is 375 00:24:27,040 --> 00:24:31,679 Speaker 3: an era of huge scientific progress when it comes to diagnosis, 376 00:24:32,480 --> 00:24:38,040 Speaker 3: I think falling through the cracks can feel extra heightened. 377 00:24:38,000 --> 00:24:42,879 Speaker 1: Now as our diagnostic tools and our scientific knowledge has 378 00:24:42,880 --> 00:24:46,639 Speaker 1: advanced so rapidly, especially over the last few decades, diagnoses 379 00:24:46,640 --> 00:24:49,960 Speaker 1: themselves have changed. They've become kind of these moving targets 380 00:24:49,960 --> 00:24:53,760 Speaker 1: sometimes where the diagnosis that existed ten years ago might 381 00:24:53,800 --> 00:24:57,240 Speaker 1: not exist today or might be broken up into different levels. 382 00:24:57,520 --> 00:25:01,320 Speaker 1: How does that moving target aspect diagnoses How does that 383 00:25:01,359 --> 00:25:03,359 Speaker 1: contribute to the diagnosis crisis. 384 00:25:04,119 --> 00:25:05,600 Speaker 2: Yes, it is interesting. 385 00:25:05,840 --> 00:25:11,080 Speaker 3: As you mentioned, the diagnosis isn't necessarily fixed. Definitions of 386 00:25:11,119 --> 00:25:17,120 Speaker 3: disease change, new conditions are discovered, Scientific knowledge progresses, and 387 00:25:17,400 --> 00:25:20,640 Speaker 3: you know, we understand new things about the human body. 388 00:25:21,119 --> 00:25:25,359 Speaker 3: There's new biomarkers that can be taken into consideration. I 389 00:25:25,400 --> 00:25:30,119 Speaker 3: think it can complicate the crisis a bit in that 390 00:25:31,480 --> 00:25:35,720 Speaker 3: perhaps decades, one hundred years ago, whatever you had, you 391 00:25:35,760 --> 00:25:37,159 Speaker 3: would have had a diagnosis for it. 392 00:25:37,040 --> 00:25:37,600 Speaker 2: It would have. 393 00:25:37,520 --> 00:25:41,199 Speaker 3: Been like melancholia or you know, it just would have 394 00:25:41,200 --> 00:25:44,280 Speaker 3: been something that was sort of is this like grab 395 00:25:44,359 --> 00:25:49,720 Speaker 3: bag of things? And now because we science acquires more precision, 396 00:25:50,440 --> 00:25:54,359 Speaker 3: sometimes when things don't fit exactly into these categories, I 397 00:25:54,359 --> 00:26:00,560 Speaker 3: think it can create a lot of uncertainty. Specifically, I 398 00:26:00,600 --> 00:26:04,720 Speaker 3: think there's sort of this category of patients who have 399 00:26:05,640 --> 00:26:09,560 Speaker 3: what's sometimes called medically unexplained illnesses. So they have a 400 00:26:09,640 --> 00:26:16,000 Speaker 3: lot of symptoms like fatigue, brain fog, headaches, but perhaps 401 00:26:16,040 --> 00:26:18,919 Speaker 3: not a lot of signs. There's no rash, there's no fever, 402 00:26:19,119 --> 00:26:22,840 Speaker 3: there's nothing that's coming up on a diagnostic test, and 403 00:26:23,280 --> 00:26:25,840 Speaker 3: you know, perhaps in the past, again maybe it wouldn't 404 00:26:25,840 --> 00:26:27,520 Speaker 3: have been a great diagnosis, but like you might have 405 00:26:27,600 --> 00:26:31,679 Speaker 3: been put into some kind of category. Again that's probably, 406 00:26:31,720 --> 00:26:35,640 Speaker 3: you know, not for the best. But today that remains 407 00:26:35,760 --> 00:26:39,560 Speaker 3: very difficult and complicated, and sometimes you don't know, am 408 00:26:39,560 --> 00:26:43,800 Speaker 3: I experiencing something totally unknown that nobody's ever going to 409 00:26:43,840 --> 00:26:46,359 Speaker 3: figure out? Or am I sort of at the edge 410 00:26:46,440 --> 00:26:50,200 Speaker 3: of modern medical knowledge and maybe in ten years there 411 00:26:50,240 --> 00:26:53,040 Speaker 3: will be sort of an understanding of what I have. 412 00:26:53,720 --> 00:26:56,359 Speaker 3: So there's some uncertainty there for sure. That's hard to 413 00:26:56,359 --> 00:26:56,840 Speaker 3: grapple with. 414 00:26:58,000 --> 00:27:00,639 Speaker 1: Let's take a quick break here, we'll better before you 415 00:27:00,680 --> 00:27:17,199 Speaker 1: know it. Welcome back, everyone. I'm here chatting with the 416 00:27:17,240 --> 00:27:21,080 Speaker 1: wonderful Alexandra Sifferlin about her book The Elusive Body. Let's 417 00:27:21,080 --> 00:27:27,200 Speaker 1: get into some more questions. This unevenness of uncertainty contributes 418 00:27:27,400 --> 00:27:32,960 Speaker 1: to diagnostic error not being distributed evenly in different populations 419 00:27:33,040 --> 00:27:36,879 Speaker 1: or with different diseases or different types of diseases. What 420 00:27:37,000 --> 00:27:39,480 Speaker 1: are some of the patterns that we see, whether it's 421 00:27:39,520 --> 00:27:43,160 Speaker 1: patient population or types of disease that are most likely 422 00:27:43,200 --> 00:27:46,320 Speaker 1: to be associated with diagnostic error, and what are some 423 00:27:46,400 --> 00:27:48,240 Speaker 1: of the reasons for these patterns. 424 00:27:48,960 --> 00:27:53,760 Speaker 3: People who have rare or like a novel disease experience 425 00:27:53,960 --> 00:27:59,119 Speaker 3: very long diagnostic journeys often and often when I speak 426 00:27:59,160 --> 00:28:02,320 Speaker 3: to people with with rare diseases, they'll talk either about 427 00:28:02,600 --> 00:28:08,560 Speaker 3: years and years going without answers or going without correct answers, 428 00:28:08,680 --> 00:28:13,360 Speaker 3: like they actually did have several diagnoses at different times, 429 00:28:13,400 --> 00:28:15,600 Speaker 3: but none of them were quite right, and maybe that 430 00:28:15,680 --> 00:28:19,040 Speaker 3: was even explained to them, like this feels like most 431 00:28:19,119 --> 00:28:23,359 Speaker 3: similar to this diagnosis, but we're not totally certain. And 432 00:28:23,400 --> 00:28:28,120 Speaker 3: so people with rare illnesses have long diagnostic journeys, typically 433 00:28:28,240 --> 00:28:31,040 Speaker 3: just simply because they are rare. Physicians don't see them 434 00:28:31,040 --> 00:28:33,399 Speaker 3: as often as they do other things, so it can 435 00:28:33,440 --> 00:28:37,320 Speaker 3: take a lot of time. And then the second group 436 00:28:37,600 --> 00:28:41,200 Speaker 3: I would say are the sort of patient category I 437 00:28:41,280 --> 00:28:47,080 Speaker 3: was referencing before, are people with so called medically unexplained illnesses. 438 00:28:47,320 --> 00:28:50,640 Speaker 3: Basically people experiencing a lot of symptoms but not a 439 00:28:50,640 --> 00:28:57,240 Speaker 3: lot of signs of illness. So again, symptoms like fatigue, headaches, 440 00:28:58,080 --> 00:29:02,360 Speaker 3: not quite feeling like myself, can't sleep, There's a variety 441 00:29:02,400 --> 00:29:05,600 Speaker 3: of things like that that don't necessarily show up on 442 00:29:06,320 --> 00:29:12,560 Speaker 3: a thermometer or a test for various viruses or the 443 00:29:12,720 --> 00:29:16,200 Speaker 3: standard tests that a physician might do, or even just 444 00:29:16,440 --> 00:29:18,720 Speaker 3: the physician is trying to do the physical exam and 445 00:29:18,760 --> 00:29:23,480 Speaker 3: there's there's no rash, there's no they're struggling to piece 446 00:29:23,480 --> 00:29:28,160 Speaker 3: it together. And I think for that category of people 447 00:29:28,560 --> 00:29:32,040 Speaker 3: living misdiagnosed or without a diagnosis for a long period 448 00:29:32,120 --> 00:29:33,640 Speaker 3: of time can be more common. 449 00:29:34,320 --> 00:29:36,280 Speaker 1: If you look at all of the different people who 450 00:29:36,320 --> 00:29:41,080 Speaker 1: are living with a diagnostic error, there's a subset that 451 00:29:41,560 --> 00:29:45,640 Speaker 1: is able to be diagnosed but is not for some reason. 452 00:29:46,640 --> 00:29:49,040 Speaker 1: How much of that reason or how much is of 453 00:29:49,080 --> 00:29:52,440 Speaker 1: that pool, is because it's not been a high priority 454 00:29:52,480 --> 00:29:56,240 Speaker 1: to investigate some of these unexplained diseases, or is the 455 00:29:56,280 --> 00:30:00,480 Speaker 1: research funding just not there, and so where is their 456 00:30:00,640 --> 00:30:05,480 Speaker 1: clearest room for improvement? In your opinion, I really do 457 00:30:05,560 --> 00:30:11,400 Speaker 1: feel like this requires improvement at almost all levels. 458 00:30:11,400 --> 00:30:14,200 Speaker 3: But it is definitely it would benefit from a systems 459 00:30:14,320 --> 00:30:18,880 Speaker 3: level solution so on, just like a very basic level 460 00:30:19,480 --> 00:30:24,760 Speaker 3: diagnostic error is. Despite the fact that I think getting 461 00:30:24,840 --> 00:30:29,000 Speaker 3: a correct diagnosis is perhaps something that matters immensely to 462 00:30:29,080 --> 00:30:32,080 Speaker 3: most people who go to see their physician, it's not 463 00:30:32,400 --> 00:30:39,280 Speaker 3: a very widely recognized problem among medicine and the public. 464 00:30:39,360 --> 00:30:42,800 Speaker 3: It gets not the same level of attention as other 465 00:30:42,840 --> 00:30:46,160 Speaker 3: things do, and so I think first and foremost it 466 00:30:46,200 --> 00:30:51,280 Speaker 3: would be sort of a recognition that diagnosis has evolved 467 00:30:51,320 --> 00:30:54,239 Speaker 3: in these many different ways, and yet it still is 468 00:30:54,280 --> 00:30:57,520 Speaker 3: something that could be improved upon, you know, even in 469 00:30:57,560 --> 00:31:01,959 Speaker 3: the United States. But I think some common issues that 470 00:31:02,000 --> 00:31:05,800 Speaker 3: I've run into from both talking to patients and talking 471 00:31:05,840 --> 00:31:09,480 Speaker 3: to physicians about diagnostic error is that everyone feels a 472 00:31:09,520 --> 00:31:15,880 Speaker 3: bit frustrated with the healthcare experience right now. You know, appointments, 473 00:31:16,080 --> 00:31:18,760 Speaker 3: if you can get one with the primary care doctor, 474 00:31:19,960 --> 00:31:25,040 Speaker 3: are often very short, which sometimes is okay if it's 475 00:31:25,080 --> 00:31:28,560 Speaker 3: something like shingles and a doctor has seen it many 476 00:31:28,600 --> 00:31:31,640 Speaker 3: many times and they see it, they diagnose it, they 477 00:31:31,640 --> 00:31:34,800 Speaker 3: give you a prescription. Like in some cases, short is okay, 478 00:31:35,320 --> 00:31:39,800 Speaker 3: but in a more complicated situation, it's really not. And 479 00:31:39,960 --> 00:31:43,640 Speaker 3: a lot of patients feel like it's so hard to 480 00:31:43,720 --> 00:31:49,000 Speaker 3: get an appointment with a physician can take months, and 481 00:31:49,040 --> 00:31:52,840 Speaker 3: then when you're there, it's a very short appointment. And 482 00:31:52,920 --> 00:31:57,000 Speaker 3: for the physician that's also not necessarily a great experience. 483 00:31:57,480 --> 00:32:01,120 Speaker 3: They're having to see more patients or periods of time. 484 00:32:02,040 --> 00:32:06,560 Speaker 3: Burnout is really high. You can be distracted or feel 485 00:32:06,680 --> 00:32:12,280 Speaker 3: rushed and problems can emerge, and so I think everyone 486 00:32:12,360 --> 00:32:16,840 Speaker 3: is desiring a little bit more humanity injected into the system, 487 00:32:16,880 --> 00:32:21,840 Speaker 3: whether it is simply the opportunity to have longer appointments 488 00:32:22,120 --> 00:32:26,600 Speaker 3: or to have just more continuity and care. Often, people 489 00:32:26,680 --> 00:32:30,200 Speaker 3: who have experienced long periods on diagnosed, you talk to 490 00:32:30,280 --> 00:32:33,240 Speaker 3: them and they've seen like eight different doctors, and they 491 00:32:33,280 --> 00:32:36,880 Speaker 3: are often feeling like they're bringing their own medical information 492 00:32:37,040 --> 00:32:40,160 Speaker 3: from physician to physician to physician, and people aren't talking 493 00:32:40,200 --> 00:32:43,880 Speaker 3: to each other. And so I think in some ways 494 00:32:44,520 --> 00:32:47,800 Speaker 3: the way that the system is organized right now is 495 00:32:47,800 --> 00:32:53,360 Speaker 3: not very conducive to the time that a complicated diagnosis 496 00:32:53,440 --> 00:32:59,040 Speaker 3: might need. And also, diagnosis often works best when it's 497 00:32:59,240 --> 00:33:04,280 Speaker 3: a team effort, and so finding ways to involve not 498 00:33:04,360 --> 00:33:08,080 Speaker 3: just the physician, but the nurse who's in the room, 499 00:33:08,720 --> 00:33:11,720 Speaker 3: you know, finding more ways for the patient to feel 500 00:33:11,840 --> 00:33:13,360 Speaker 3: kind of empowered to share more. 501 00:33:13,960 --> 00:33:14,760 Speaker 2: It really is. 502 00:33:14,680 --> 00:33:19,160 Speaker 3: Something that I think from the top down, we would 503 00:33:19,160 --> 00:33:22,400 Speaker 3: greatly benefit from sort of rethinking the way we're doing 504 00:33:22,400 --> 00:33:22,960 Speaker 3: things now. 505 00:33:23,720 --> 00:33:28,240 Speaker 1: I agree, and in some areas, just geographically speaking, it 506 00:33:28,320 --> 00:33:30,720 Speaker 1: might be more difficult to implement than in others. This 507 00:33:30,840 --> 00:33:35,120 Speaker 1: sort of collaboration, bringing everyone on board and you share 508 00:33:35,200 --> 00:33:39,160 Speaker 1: the story in your book of the Procter family, which 509 00:33:39,320 --> 00:33:43,280 Speaker 1: had several members that had very long and frustrating diagnostic 510 00:33:43,320 --> 00:33:47,160 Speaker 1: journeys before they finally found an answer. Could you tell 511 00:33:47,200 --> 00:33:50,200 Speaker 1: me about a little bit about their story and how 512 00:33:50,200 --> 00:33:54,520 Speaker 1: they ultimately connected with the Undiagnosed Diseases Program, which is 513 00:33:54,760 --> 00:33:56,160 Speaker 1: just an incredible program. 514 00:33:56,400 --> 00:33:59,520 Speaker 3: Yes, yes, so we'll happily talk about them. So, the 515 00:34:00,400 --> 00:34:04,640 Speaker 3: family is a family of five siblings from very rural Kentucky, 516 00:34:05,320 --> 00:34:10,080 Speaker 3: and the oldest is Louise, and when she was around 517 00:34:10,080 --> 00:34:14,759 Speaker 3: twenty five years old, she first started experiencing these episodes 518 00:34:14,800 --> 00:34:17,640 Speaker 3: where basically she would be walking for anywhere from five 519 00:34:17,680 --> 00:34:20,200 Speaker 3: to ten minutes, and all of a sudden, she would 520 00:34:20,480 --> 00:34:25,879 Speaker 3: basically freeze in place. It felt like her legs and 521 00:34:26,080 --> 00:34:30,040 Speaker 3: her feet were almost becoming like rocks, and it was 522 00:34:30,200 --> 00:34:34,000 Speaker 3: so painful that it felt like she couldn't move any further. 523 00:34:35,160 --> 00:34:38,560 Speaker 3: And over time, she was the eldest of these five siblings. Overtime, 524 00:34:38,719 --> 00:34:43,879 Speaker 3: every single sibling started experiencing this same condition, but being 525 00:34:43,880 --> 00:34:46,360 Speaker 3: in rural Kentucky, you know, they would all go see 526 00:34:46,640 --> 00:34:49,520 Speaker 3: their physician and there was only so much that could 527 00:34:49,520 --> 00:34:53,320 Speaker 3: be done. They would be given diagnoses of perhaps it 528 00:34:53,480 --> 00:34:57,400 Speaker 3: was early arthritis, but that actually didn't seem right, and 529 00:34:57,440 --> 00:35:00,840 Speaker 3: they weren't responding to standard of care. They would go 530 00:35:00,920 --> 00:35:04,160 Speaker 3: see specialists throughout the state and nobody seemed to have 531 00:35:04,200 --> 00:35:07,720 Speaker 3: any answers. And finally it had been something like thirty 532 00:35:07,840 --> 00:35:12,480 Speaker 3: years and Louise went to her doctor and was just desperate, 533 00:35:12,640 --> 00:35:15,040 Speaker 3: like that, I am so desperate. We need to find 534 00:35:15,760 --> 00:35:20,200 Speaker 3: something or someone to help us, because this is just untenable. 535 00:35:20,960 --> 00:35:24,640 Speaker 3: And thankfully her doctor had found out about the Undiagnosed 536 00:35:24,640 --> 00:35:28,520 Speaker 3: Diseases Program, which is run by the National Institutes of Health, 537 00:35:28,560 --> 00:35:31,520 Speaker 3: and at this time it had just recently started. And 538 00:35:31,560 --> 00:35:36,560 Speaker 3: basically this program at the NIH is this group of 539 00:35:36,920 --> 00:35:41,719 Speaker 3: clinicians and researchers from a variety of different disciplines who 540 00:35:41,800 --> 00:35:47,440 Speaker 3: come together to crack the most complicated medical mysteries. It's 541 00:35:47,520 --> 00:35:52,120 Speaker 3: led by this geneticist and pediatrician, doctor William gall and 542 00:35:52,840 --> 00:35:57,480 Speaker 3: they basically accept applications from across the country of people 543 00:35:57,520 --> 00:36:01,560 Speaker 3: who have something that has bogged gold the minds of 544 00:36:01,920 --> 00:36:04,920 Speaker 3: all the physicians that they have seen and that doctors 545 00:36:04,960 --> 00:36:07,960 Speaker 3: have recognized like I don't think I have anything else, 546 00:36:08,719 --> 00:36:11,719 Speaker 3: I don't know what this is. So they send them 547 00:36:11,760 --> 00:36:15,200 Speaker 3: to this NIH program, which has now become the Undiagnosed 548 00:36:15,239 --> 00:36:18,719 Speaker 3: Diseases Network, and there are some similar programs across the 549 00:36:18,760 --> 00:36:22,359 Speaker 3: country at university medical centers. But what's so amazing about 550 00:36:22,400 --> 00:36:26,320 Speaker 3: this program is what they do is they bring together 551 00:36:26,680 --> 00:36:30,480 Speaker 3: a group of experts in different categories, So you have 552 00:36:30,600 --> 00:36:35,840 Speaker 3: a geneticist, a cardiologist, a neurologist, there could be a dermatologist, 553 00:36:36,480 --> 00:36:40,920 Speaker 3: and they meet and discuss the patient before they even 554 00:36:41,040 --> 00:36:44,960 Speaker 3: show up. So already this group of experts has combed 555 00:36:45,000 --> 00:36:48,000 Speaker 3: over their medical history, seen all the imaging that they've done, 556 00:36:48,960 --> 00:36:51,359 Speaker 3: and then they develop a sort of plan for how 557 00:36:51,360 --> 00:36:53,920 Speaker 3: they are going to try to do this diagnosis the 558 00:36:54,000 --> 00:36:56,640 Speaker 3: patient or this or in the Procter family case, the 559 00:36:56,800 --> 00:36:59,640 Speaker 3: entire family. It was all five siblings and their parents 560 00:36:59,680 --> 00:37:03,000 Speaker 3: went to the NIH and they spent an entire week 561 00:37:03,480 --> 00:37:07,600 Speaker 3: going through various testing, you know, just really long appointments, 562 00:37:07,640 --> 00:37:12,120 Speaker 3: doing a lot of genetic testing, and ultimately it was 563 00:37:12,160 --> 00:37:15,760 Speaker 3: discovered that all five siblings have a very rare genetic 564 00:37:15,880 --> 00:37:21,759 Speaker 3: disease called aterial calcification due to deficiency of CD seventy three. 565 00:37:22,239 --> 00:37:25,759 Speaker 3: They call it ac DC for short, but it was 566 00:37:26,320 --> 00:37:31,000 Speaker 3: it was a never seen before genetic incredibly rare genetic disorder, 567 00:37:31,520 --> 00:37:34,799 Speaker 3: and they were the first cracked case of the Undiagnosed 568 00:37:34,800 --> 00:37:37,799 Speaker 3: Diseases program, which has gone on to diagnose many, many, 569 00:37:37,800 --> 00:37:42,520 Speaker 3: many more Americans. But it was really amazing because you know, 570 00:37:42,560 --> 00:37:46,919 Speaker 3: this group, living in rural Kentucky didn't necessarily have access 571 00:37:47,440 --> 00:37:51,359 Speaker 3: to know the best of the best diagnostic technologies, and 572 00:37:51,440 --> 00:37:54,560 Speaker 3: so through the NIH, they were able to get diagnosed 573 00:37:54,760 --> 00:37:55,680 Speaker 3: after years. 574 00:37:56,120 --> 00:38:00,760 Speaker 1: I think it's remarkable what this program has been shown 575 00:38:00,800 --> 00:38:04,160 Speaker 1: to do and the potential that this program has, which 576 00:38:04,200 --> 00:38:09,840 Speaker 1: also is alarming considering the recent cuts to basic research, 577 00:38:10,760 --> 00:38:15,800 Speaker 1: especially given that research into rare diseases is so tends 578 00:38:15,800 --> 00:38:17,960 Speaker 1: to be such a challenging thing in the first place. 579 00:38:18,360 --> 00:38:21,160 Speaker 1: Can you speak any more to what what the horizon 580 00:38:21,280 --> 00:38:25,400 Speaker 1: looks like for rare disease programs like this and just 581 00:38:25,480 --> 00:38:28,480 Speaker 1: research in general, given the recent cuts from this administration. 582 00:38:29,080 --> 00:38:30,279 Speaker 2: Definitely so. 583 00:38:30,920 --> 00:38:35,080 Speaker 3: Rare diseases, of course, by definition, affect small populations, So 584 00:38:35,200 --> 00:38:40,480 Speaker 3: in general, rare diseases tend to really struggle to get 585 00:38:40,840 --> 00:38:44,719 Speaker 3: research funding, definitely struggle to get funding on par with 586 00:38:44,880 --> 00:38:49,880 Speaker 3: more common ailments. So getting funding from the NIH or 587 00:38:49,920 --> 00:38:55,000 Speaker 3: having federal support is hugely important because it is very 588 00:38:55,000 --> 00:38:59,320 Speaker 3: difficult for private industry or a private pharmaceutical company to 589 00:38:59,400 --> 00:39:02,680 Speaker 3: take on the cost of a clinical trial for something 590 00:39:02,840 --> 00:39:06,200 Speaker 3: that is going to affect a small number is just difficult. 591 00:39:06,400 --> 00:39:10,320 Speaker 3: It's difficult math to make work. So having federal funding 592 00:39:10,360 --> 00:39:14,640 Speaker 3: and having support in that way is hugely important. And 593 00:39:15,360 --> 00:39:19,120 Speaker 3: what was very scary for the rare disease community was 594 00:39:19,160 --> 00:39:22,200 Speaker 3: when there was a proposed forty percent cut to the 595 00:39:22,280 --> 00:39:28,600 Speaker 3: NIH budget. Thankfully that did end up being rejected, largely 596 00:39:28,719 --> 00:39:34,520 Speaker 3: thanks to advocates and lawmakers, that full cut didn't end 597 00:39:34,600 --> 00:39:40,440 Speaker 3: up happening. But where there remains concerns is that because 598 00:39:40,480 --> 00:39:44,879 Speaker 3: it is so difficult to get funding, Ideally, the rare 599 00:39:44,960 --> 00:39:51,480 Speaker 3: disease research infrastructure has some semblance of stability. So having 600 00:39:52,400 --> 00:39:56,120 Speaker 3: a kind of uncertain future that perhaps this funding that 601 00:39:56,360 --> 00:39:59,720 Speaker 3: had been somewhat consistent could just go away very quickly 602 00:40:00,760 --> 00:40:04,480 Speaker 3: is very difficult because you need the certainty so that 603 00:40:04,960 --> 00:40:09,760 Speaker 3: scientists want to do this research and feel like there's 604 00:40:09,920 --> 00:40:14,560 Speaker 3: a path forward to continue this kind of research. And 605 00:40:14,640 --> 00:40:19,719 Speaker 3: so the uncertainty created by those cuts has shaken a 606 00:40:19,760 --> 00:40:24,600 Speaker 3: research community that requires a lot of resources and people 607 00:40:24,600 --> 00:40:28,080 Speaker 3: who are willing to dedicate their careers to it over 608 00:40:28,120 --> 00:40:31,480 Speaker 3: a very long period of time. And that kind of 609 00:40:31,520 --> 00:40:33,440 Speaker 3: system really requires stability. 610 00:40:34,120 --> 00:40:37,680 Speaker 1: Your discussion of the Procter family and you're sharing their experience, 611 00:40:38,160 --> 00:40:41,640 Speaker 1: highlighted a few things for me that are so fundamental too, 612 00:40:41,800 --> 00:40:46,560 Speaker 1: not just to the impact of a diagnostic error on 613 00:40:46,640 --> 00:40:50,080 Speaker 1: an individual or on an individual family, but just the 614 00:40:50,280 --> 00:40:55,920 Speaker 1: general impact on trust in science and medicine overall. As 615 00:40:55,960 --> 00:40:59,600 Speaker 1: we talked about in the beginning, science has advanced so 616 00:40:59,719 --> 00:41:03,960 Speaker 1: rapid and so when it can't provide a diagnosis, when 617 00:41:04,000 --> 00:41:07,279 Speaker 1: your doctor says, well, I don't know, so it's not me, 618 00:41:07,560 --> 00:41:12,400 Speaker 1: it's you, this kind of fuels mistrust and science and medicine, 619 00:41:12,440 --> 00:41:15,759 Speaker 1: and it might push people to seek alternative therapies that 620 00:41:15,840 --> 00:41:17,880 Speaker 1: where someone says it is not afraid to make the 621 00:41:17,920 --> 00:41:21,560 Speaker 1: claim of this will cure you even though it won't. 622 00:41:21,800 --> 00:41:24,120 Speaker 1: So can you talk a little bit more about how 623 00:41:24,120 --> 00:41:27,880 Speaker 1: you think the diagnosis crisis has contributed to this rise 624 00:41:27,920 --> 00:41:29,080 Speaker 1: of mistrust. 625 00:41:29,480 --> 00:41:33,839 Speaker 3: When someone doesn't get a diagnosis, or if they are 626 00:41:33,960 --> 00:41:38,200 Speaker 3: just spending a very long period of time physically suffering 627 00:41:38,680 --> 00:41:43,480 Speaker 3: and feeling like nobody is providing any answers, or they 628 00:41:43,600 --> 00:41:46,239 Speaker 3: feel like they sort of have had to take on 629 00:41:46,520 --> 00:41:50,400 Speaker 3: the burden themselves to figure this out, they feel very alone, 630 00:41:51,200 --> 00:41:55,279 Speaker 3: very isolated, and scared. I feel like those are three 631 00:41:55,320 --> 00:41:58,400 Speaker 3: of the emotions that many of the people I spoke 632 00:41:58,440 --> 00:42:01,359 Speaker 3: to for this book would talk about, just feeling like 633 00:42:02,320 --> 00:42:08,680 Speaker 3: abandoned basically, and many do have empathy for what physicians 634 00:42:08,680 --> 00:42:11,160 Speaker 3: are going through as well. It can be a very 635 00:42:11,200 --> 00:42:15,520 Speaker 3: frustrating experience as a doctor. You go into medicine because 636 00:42:15,520 --> 00:42:17,759 Speaker 3: you want to help people, and if you cannot help 637 00:42:17,800 --> 00:42:21,640 Speaker 3: the person in front of you, you too are frustrated 638 00:42:21,680 --> 00:42:25,080 Speaker 3: and sort of feeling pretty bad. But what I think 639 00:42:25,120 --> 00:42:29,759 Speaker 3: happens for some patients is they don't just decide like, Okay, well, 640 00:42:29,800 --> 00:42:32,680 Speaker 3: I guess I'll just go about my day, and that's 641 00:42:32,800 --> 00:42:38,719 Speaker 3: that they can end up going to alternative sources outside 642 00:42:38,760 --> 00:42:42,120 Speaker 3: of the mainstream medical system. And in some cases that 643 00:42:42,200 --> 00:42:44,719 Speaker 3: might be okay, but in some cases it might not. 644 00:42:44,920 --> 00:42:48,240 Speaker 3: There's a lot of people trying to sell you things online, 645 00:42:48,360 --> 00:42:53,000 Speaker 3: especially when it comes to health and medicine, that you know, 646 00:42:53,040 --> 00:42:55,000 Speaker 3: in the best case scenario don't work and in the 647 00:42:55,040 --> 00:42:59,120 Speaker 3: worst case scenario could be really harmful. I think there's 648 00:42:59,320 --> 00:43:03,799 Speaker 3: just been somewhat of a breakdown in trust that would 649 00:43:03,880 --> 00:43:08,360 Speaker 3: benefit again from feeling like when you interact with the 650 00:43:08,400 --> 00:43:12,920 Speaker 3: medical system, you are engaging with a humane system meant 651 00:43:12,960 --> 00:43:16,360 Speaker 3: to help you, and I think on both sides, patients 652 00:43:16,400 --> 00:43:19,680 Speaker 3: and physicians often feel like they are engaging in a 653 00:43:19,719 --> 00:43:24,920 Speaker 3: system that's not like that. That again, appointments are rushed, 654 00:43:25,320 --> 00:43:29,279 Speaker 3: People who have more complicated diagnoses feel like they're being 655 00:43:29,360 --> 00:43:34,359 Speaker 3: dumped from physician to physician, and everybody's really frustrated. And 656 00:43:34,440 --> 00:43:37,759 Speaker 3: I think there would be a lot of faith restored 657 00:43:38,640 --> 00:43:41,200 Speaker 3: if it felt for both patients and doctors that were 658 00:43:41,280 --> 00:43:43,719 Speaker 3: kind of more in this together, that even if this 659 00:43:43,840 --> 00:43:45,920 Speaker 3: is going to be a situation on which there's not 660 00:43:46,040 --> 00:43:49,720 Speaker 3: going to be a quick answer, we're sort of still 661 00:43:49,760 --> 00:43:53,200 Speaker 3: together on this path figuring out how to navigate the 662 00:43:53,280 --> 00:43:56,160 Speaker 3: uncertainty that is inherent to medicine. That's not just going 663 00:43:56,200 --> 00:44:00,520 Speaker 3: to disappear even with all this scientific progress. But I 664 00:44:00,560 --> 00:44:04,560 Speaker 3: think that sort of faith in medicine really needs to 665 00:44:04,600 --> 00:44:07,000 Speaker 3: be restored it doesn't. 666 00:44:07,160 --> 00:44:11,120 Speaker 1: I'm so glad you mentioned this facet of uncertainty being 667 00:44:11,400 --> 00:44:15,400 Speaker 1: a part of medicine, Like by design, uncertainty is built 668 00:44:15,400 --> 00:44:18,680 Speaker 1: into science, it's built into medicine. Can you tell me 669 00:44:18,719 --> 00:44:22,880 Speaker 1: more about uncertainty in medicine and why it's so important 670 00:44:22,920 --> 00:44:24,239 Speaker 1: to acknowledge? 671 00:44:24,520 --> 00:44:27,920 Speaker 3: Yes, I mean, this is one thing that's maybe surprised 672 00:44:27,920 --> 00:44:30,440 Speaker 3: me more than it should have. But when I was 673 00:44:30,680 --> 00:44:36,160 Speaker 3: talking to many physicians about diagnosis, and you know, what 674 00:44:36,239 --> 00:44:38,160 Speaker 3: is it like for you if you're in a situation 675 00:44:38,239 --> 00:44:40,400 Speaker 3: in which you really don't know what is going on, 676 00:44:41,800 --> 00:44:45,160 Speaker 3: which you know is going to happen, but so many 677 00:44:45,200 --> 00:44:49,399 Speaker 3: would talk about how deeply uncomfortable it can be, and 678 00:44:49,560 --> 00:44:55,160 Speaker 3: that sometimes medicine can have this culture of the doctor 679 00:44:55,239 --> 00:45:02,320 Speaker 3: is supposed to be this basically genius person who is 680 00:45:02,680 --> 00:45:07,200 Speaker 3: supposed to have all the answers at all times. Ideally 681 00:45:07,239 --> 00:45:11,000 Speaker 3: they're like doctor House and they just know everything based 682 00:45:11,080 --> 00:45:15,560 Speaker 3: on a quick appointment, and it's just it can be 683 00:45:15,760 --> 00:45:18,080 Speaker 3: sort of too hard to live up to. But also 684 00:45:18,680 --> 00:45:22,400 Speaker 3: uncertainty and navigating that is often not something that is 685 00:45:22,520 --> 00:45:27,680 Speaker 3: very explicitly discussed in medical school. For instance. I do 686 00:45:27,719 --> 00:45:31,480 Speaker 3: think that's changing, which is great, but I think for 687 00:45:31,520 --> 00:45:35,600 Speaker 3: a very long time, nobody's really given the tools or 688 00:45:35,640 --> 00:45:39,040 Speaker 3: even a script for what to say in a moment 689 00:45:39,080 --> 00:45:42,560 Speaker 3: with a patient when you don't have an answer for them, 690 00:45:43,239 --> 00:45:47,200 Speaker 3: and you do want to make clear that I'm struggling 691 00:45:47,239 --> 00:45:49,719 Speaker 3: to find an answer, I don't want to totally discourage 692 00:45:50,239 --> 00:45:53,480 Speaker 3: you and sometimes they just literally don't know what to 693 00:45:53,560 --> 00:45:56,320 Speaker 3: say because nobody has really talked them through it. Because 694 00:45:56,360 --> 00:46:01,520 Speaker 3: even though medicine has this inherent uncertainty to it, it's 695 00:46:01,560 --> 00:46:05,680 Speaker 3: not necessarily always been a culture that's been comfortable acknowledging that. 696 00:46:06,320 --> 00:46:11,799 Speaker 3: And so I think some of the diagnosticians that I've 697 00:46:11,840 --> 00:46:14,480 Speaker 3: spoken to in my book who are really skilled, are 698 00:46:14,520 --> 00:46:18,640 Speaker 3: also really skilled at having the discussion with the patient 699 00:46:19,200 --> 00:46:22,759 Speaker 3: when they don't know the answer, and creating a kind 700 00:46:22,840 --> 00:46:26,359 Speaker 3: of plan and kind of being willing to check back 701 00:46:26,400 --> 00:46:31,080 Speaker 3: in and sort of be very open about the uncertainty, 702 00:46:31,120 --> 00:46:34,160 Speaker 3: but in a way that isn't discouraging, but is just 703 00:46:34,160 --> 00:46:37,880 Speaker 3: sort of acknowledging the reality of the situation. But typically 704 00:46:37,920 --> 00:46:41,040 Speaker 3: it's required that person to have made a conscious effort 705 00:46:41,640 --> 00:46:44,040 Speaker 3: to talk about that and sort of talk about it 706 00:46:44,040 --> 00:46:46,840 Speaker 3: with their colleagues and sort of be more open to 707 00:46:47,120 --> 00:46:49,799 Speaker 3: embracing the fact that they're not going to have all 708 00:46:49,840 --> 00:46:55,200 Speaker 3: of the answers. Sometimes diagnostic error is not talked about 709 00:46:55,480 --> 00:47:01,560 Speaker 3: because a health system worries that even focusing on the 710 00:47:01,600 --> 00:47:04,360 Speaker 3: fact that they don't get the diagnosis correct all the 711 00:47:04,440 --> 00:47:08,440 Speaker 3: time would open them up to some sort of like 712 00:47:08,600 --> 00:47:12,440 Speaker 3: legal repercussions, which I do understand, but what ends up 713 00:47:12,440 --> 00:47:16,319 Speaker 3: happening is no one talking about it. So a lot 714 00:47:16,360 --> 00:47:20,080 Speaker 3: of the doctors who I interviewed in my book, in 715 00:47:20,120 --> 00:47:24,200 Speaker 3: their own personal practice, what they will sometimes do is track, 716 00:47:24,560 --> 00:47:28,080 Speaker 3: let's say, like two weeks worth of cases of people 717 00:47:28,120 --> 00:47:32,319 Speaker 3: that they saw and look at how they ended the 718 00:47:32,400 --> 00:47:36,839 Speaker 3: visit if I diagnose them with X or Y, and 719 00:47:36,920 --> 00:47:39,280 Speaker 3: then they go and try to follow up and figure 720 00:47:39,320 --> 00:47:43,960 Speaker 3: out was that actually the correct diagnosis, Because so often 721 00:47:44,200 --> 00:47:47,840 Speaker 3: a physician who's maybe seeing a patient in an emergency 722 00:47:47,880 --> 00:47:51,080 Speaker 3: room situation or something like that, they may never even 723 00:47:51,200 --> 00:47:54,680 Speaker 3: know that they didn't get the diagnosis right. Nobody is 724 00:47:54,719 --> 00:47:57,840 Speaker 3: following up to let them know that it was incorrect, 725 00:47:58,560 --> 00:48:01,960 Speaker 3: and so it can sometimes take some conscious effort and 726 00:48:02,040 --> 00:48:04,759 Speaker 3: being open to the idea that I know for a 727 00:48:04,880 --> 00:48:07,239 Speaker 3: fact that there's no way that I have gotten the 728 00:48:07,280 --> 00:48:11,520 Speaker 3: diagnosis right every single time, and I want to actually 729 00:48:11,560 --> 00:48:13,840 Speaker 3: go back and see where did I get it wrong 730 00:48:14,080 --> 00:48:17,640 Speaker 3: and try to understand what happened. Was it just that 731 00:48:17,719 --> 00:48:21,240 Speaker 3: was a particularly complicated case and anyone would have gotten 732 00:48:21,280 --> 00:48:23,560 Speaker 3: it wrong, or was it at the end of my 733 00:48:23,640 --> 00:48:26,440 Speaker 3: shift and I was really tired, and did I miss 734 00:48:26,440 --> 00:48:30,640 Speaker 3: something I shouldn't have And how does that experience inform 735 00:48:30,680 --> 00:48:34,000 Speaker 3: what I do next time? But I do think that 736 00:48:34,080 --> 00:48:37,680 Speaker 3: requires a little bit of humility on the physician's part 737 00:48:37,880 --> 00:48:40,759 Speaker 3: to even want to go back and look at where 738 00:48:40,760 --> 00:48:41,920 Speaker 3: they may be aired. 739 00:48:42,719 --> 00:48:45,879 Speaker 1: So many of us have experience firsthand or secondhand with 740 00:48:46,320 --> 00:48:49,439 Speaker 1: diagnostic error, waiting forever, having your doctor feel like they're 741 00:48:49,480 --> 00:48:52,799 Speaker 1: not listening to you, and feeling like, yes, this is 742 00:48:52,920 --> 00:48:55,200 Speaker 1: my story. That person has a story. That person has 743 00:48:55,239 --> 00:48:57,880 Speaker 1: a story. But what I loved about your book is 744 00:48:57,920 --> 00:49:01,120 Speaker 1: that you are pulling out the common threads throughout these 745 00:49:01,160 --> 00:49:04,000 Speaker 1: stories and saying, what is the bigger picture here? What 746 00:49:04,160 --> 00:49:08,399 Speaker 1: are the issues that are guiding this, and what can 747 00:49:08,440 --> 00:49:12,400 Speaker 1: we do about it? And I just really appreciated it, 748 00:49:12,440 --> 00:49:15,080 Speaker 1: And I appreciate also so much you taking the time 749 00:49:15,120 --> 00:49:17,520 Speaker 1: to chat with me today. So thank you so much 750 00:49:17,560 --> 00:49:18,480 Speaker 1: for coming on the show. 751 00:49:18,600 --> 00:49:19,840 Speaker 2: Thank you so much for having me. 752 00:49:38,760 --> 00:49:41,680 Speaker 1: A big thank you again to Alexandra Sifferlin for taking 753 00:49:41,760 --> 00:49:44,480 Speaker 1: the time to chat with me. If you enjoyed today's 754 00:49:44,480 --> 00:49:46,879 Speaker 1: episode and would like to learn more, check out our 755 00:49:46,920 --> 00:49:49,759 Speaker 1: website this podcast will Kill You dot com, or I'll 756 00:49:49,760 --> 00:49:52,280 Speaker 1: post a link to where you can find the Elusive 757 00:49:52,320 --> 00:49:56,239 Speaker 1: Body Patients, doctors and the Diagnosis Crisis, as well as 758 00:49:56,239 --> 00:49:58,680 Speaker 1: a link to Alexandra's website where you can find her 759 00:49:58,719 --> 00:50:01,920 Speaker 1: other incredible work. And don't forget, you can check out 760 00:50:01,920 --> 00:50:05,320 Speaker 1: our website for all sorts of other cool things, including 761 00:50:05,360 --> 00:50:09,239 Speaker 1: but not limited to, transcripts, quarantine recipes, show notes, and 762 00:50:09,280 --> 00:50:12,400 Speaker 1: references for all of our episodes, links to merch our 763 00:50:12,400 --> 00:50:15,439 Speaker 1: bookshop dot org affiliate page, our Goodreads list, a first 764 00:50:15,440 --> 00:50:19,760 Speaker 1: hand account form and music by Bloodmobile. Speaking of which, 765 00:50:19,800 --> 00:50:22,319 Speaker 1: thank you to Bloodmobile for providing the music for this 766 00:50:22,480 --> 00:50:25,840 Speaker 1: episode and all of our episodes. Thank you to Leana 767 00:50:25,840 --> 00:50:28,960 Speaker 1: Sculaci and Tom bray Fogel for our audio mixing, and 768 00:50:29,040 --> 00:50:32,000 Speaker 1: thanks to you listeners for listening. I hope you liked 769 00:50:32,000 --> 00:50:35,600 Speaker 1: this episode and are loving being part of the TPWKY 770 00:50:35,640 --> 00:50:39,480 Speaker 1: book Club. A special thank you, as always to our 771 00:50:39,600 --> 00:50:44,680 Speaker 1: fantastic patrons. We appreciate your support so very much. Well, 772 00:50:44,960 --> 00:51:03,480 Speaker 1: until next time, keep washing those hands, U,