Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.

Dr. House  

12:52 PM. Dr. House checks in. Please write that down. Do you have cable TV here somewhere? General Hospital starts in eight minutes.

Dr. Cuddy  

No TV, but we've got patients.

Emily Silverman  

For those who don't recognize the voice that is Dr. Gregory House of the hugely popular television series from the early 2000s "House M.D."

Dr. House  

Cough just won't go away? Runny nose looks a funny color?

Dr. Cuddy  

Patient admitted complaining of back spasms. 

Dr. House  

I think I read about something like that in the New England-

Dr. Cuddy  

Patient is orange.

Dr. House  

the color? 

Dr. Cuddy  

No, the fruit. 

Dr. House  

How orange? 

Dr. Cuddy  

Exam room one.

Emily Silverman  

House is a legendary diagnostician that heads up a team of doctors that solve the medical mysteries no other doctors can. He's cantankerous. He's remarkably rude and, of course, brilliant.

Dr. Cuddy  

You're talking about brain surgery. 

Dr. House  

I'm talking about really cool brain surgery.

Emily Silverman  

His name is actually a clever nod to Sherlock Holmes. And like Holmes, Dr. House is fictional. We know this because House solves everything. All medical cases he touches are gradually stripped of uncertainty by the sheer force of House's medical deduction.

Dr. House  

Clue number one: if I were Jesus, carrying this kid would be as easy as turning water into wine. 

Dr. Foreman  

Demonic possession?

Dr. House  

Close, but no wafer. Clue number two: rheumatology rowan was almost right. It causes autoimmune symptoms. 

Dr. Chase  

Leprosy? 

Dr. Foreman  

Yeah, that's real big in the jersey suburbs.

Dr. House  

It's leprosy. 

Emily Silverman  

So we tried to find an episode of House where he isn't able to solve the case where uncertainty rules the day. Just one episode. We actually put the question to the House M.D subreddit, which boasts 119,000 members, and we got a lot of responses. They found multiple episodes where House's colleagues cracked the case, and a few where the patient died, which sounded promising at first, in a weird way, but House eventually solves those cases during the autopsy. The one episode where fans agreed that House came closest to not solving a case was the season two finale, an episode titled "No Reason", where the patient is a man with an engorged tongue.

Dr. House  

It's hilarious to watch him try and talk. I asked him anything I could think of. Favorite dessert topping?

House's Patient  

Whipped cream. (with lisp)

Emily Silverman  

It's a wild episode. The patient bleeds into his ocular orbit, and more grizzly things actually happen that I won't get into. It was the season finale, after all. But the fans are right, the case goes unsolved, and there's a reason it goes unsolved.

Jack Moriarty  

Are you hallucinating? 

Dr. House  

Yeah, I'm hallucinating. 

Jack Moriarty  

No. I mean, right now. Are you hallucinating?

Emily Silverman  

House hallucinates the whole thing. It's something having to do with the experimental ketamine treatment that house was given after being shot at the beginning of the episode, which is a long story, but the point is that uncertainty, even here, had to be explained away. Uncertainty, almost as a concept was never allowed to remain in House M.D throughout the entirety of its 177 episode run. The writers must have thought that for the audience, lingering uncertainty would be unbearable. That audiences wouldn't accept it, that it just wasn't satisfying.

Gurpreet Dhaliwal  

Much of what we do in our cases and our simulations tend to be cases that have a linear path. There's a presentation, there's a diagnostic step, and we know it.

Emily Silverman  

This is Gurpreet Dhaliwal, a professor of medicine at UCSF. He's actually kind of a real life House, although he'd probably dispute that. A New York Times article about Gurpreet's diagnostic abilities wrote that to observe him at work is like watching Steven Spielberg tackle a script or Rory Mcllroy a golf course. Here he's talking about case conferences, where medical trainees walk through a specific patient's case to understand their course of diagnosis and treatment, where typically the diagnoses are very clean and simple.

Gurpreet Dhaliwal  

Imagine instead, if the cases were messy, they ended without resolution. I can tell you right now, we have a case, and the diagnosis is uncertain, at the end people'd sort of energy falls out of the room. Everyone wants the clear answer, and I get that, I mean I'm as guilty as everyone else. I wanted a simple ending, right? A clean ending. But imagine if many case conferences were sort of like, No, this story is just about the resident I'm wrestling with the messiness of a case where we're really not sure if that was gout or it was cellulitis, and they were treated for both. 

Emily Silverman  

What if, along with training doctors in the art of diagnostic deduction, they were also taught how to sit with uncertainty? How to thrive in ambiguity. Because that's the reality. Not every patient that walks through the door is gonna have a home run diagnosis.

Gurpreet Dhaliwal  

Then the teacher would have a very different skill. The teacher, instead of being sort of a font of knowledge, winds up sort of narrating their thinking along the way.

Emily Silverman  

In fact, when we spoke with Gurpreet, we didn't even have to ask him to list the moments uncertainty he'd faced that week. He already had a list.

Gurpreet Dhaliwal  

These are things I wrote down. The patient's potassium normalized after I replaced it. Do I have to send them out of the hospital with that or was that sufficient? A patient had a four hour plane flight and they came in with a DVT. Is that enough to call it provoked or unprovoked? If I pull the Foley catheter tonight and it has to be reinserted in the middle of the night. Is the urologist going to be available to put that in? Someone that had a report on their Apple phone of having a super ventricular tachycardia, and they were symptomatic, but now they're fine. Do I trust the apple watch? Did someone have an innocuous fall, or are they a victim of elder abuse? I mean, the list goes on and on and on.

Emily Silverman  

This was one week, and this is uncertainty from someone who's been called a master diagnostician. He literally gets on stage and attempts to solve cases in front of audiences, and usually succeeds. 

Gurpreet Dhaliwal  

This may be as much a reflection of like my personality as in this sort of experience. I find it to be really invigorating. I think about this. I say, you know, if there was no uncertainty, you wouldn't need a doctor. If the issue is algorithmic and predictable, you know, anything from a kiosk to an AI system could solve it. So if there was no uncertainty, you wouldn't need a doctor. So in some sense, when those moments come up, I recognize, like, that's what I'm here for, and that's what we're here for.

Emily Silverman  

This is the Nocturnists new documentary series, Uncertainty in Medicine. For the next few months, we'll be peering into the great unknown. Uncertainty is at the heart of medicine, and as Gurpreet just pointed out, it's kind of the reason doctors exist in the first place. A patient describes what's happening in their body. A doctor brings their medical knowledge to the table, and together they chart a course through uncertainty. Done well, these collaborations represent the very best of medicine. But done poorly, they can cause profound harm. Last year, the American Board of Internal Medicine recognized the urgency of addressing Uncertainty in Medicine and put out a call for project proposals. As one of the three grant recipients we committed ourselves to tackling this topic through storytelling. To create the series, we gathered dozens of stories from doctors and patients through their voices, we'll explore the many ways uncertainty manifests in medicine and how we can thrive in that uncertainty, while also remembering that doctors and patients are ultimately on the same team, facing the unknown together. Between these episodes, we'll bring you uncertainty profiles, conversations with people both inside and outside medicine, who are experts at navigating high uncertainty environments. A patient safety officer, an improvisational dancer, a Navy admiral. These voices bring fresh insights and practical wisdom. But first, let's introduce Alexa Miller, our uncertainty correspondent. Alexa is an arts educator who has taught medical learners for over 20 years through her organization arts practica, and writes a newsletter on sub stack called  "The Medicine: Arts and Letters for Leaders of Health and Care". I've known Alexa for a long time, and I always knew that her work straddled the arts and medicine, but I never knew her personal story. I never knew what brought her to this work in the first place. So in the spirit of The Nocturnists, I invited Alexa to sit down with me and tell me her story.

Alexa Miller  

In many ways, my entire life has been inseparable from medical learning and medical error since the day I was born. One of my earliest memories, actually, is I'm sitting on the floor, I'm a toddler, and I had this toy that I loved so much. It was this red and blue plastic mailbox. It had cut out shapes, a square and a triangle and a circle, and then it had these corresponding blocks. And I remember sitting on the floor playing with that toy, hearing a noise that unfortunately was very, very familiar to me. My dad screaming at my older sister. I grew up in a home where there was, unfortunately, a whole lot of yelling, and a lot of it revolved around my older sister, who had some very challenging and disruptive behaviors. Our household was a very academic one. My mom was a celebrated scholar of Russian literature. My dad was a celebrated research scientist. Both of them won Guggenheims, but I think that their behavior could really only be described as people who were professionally under a ton of pressure, who were really at the end of their rope and were doing their best. Because she was very loud and disruptive, and it did not fit into their framework at all as to how you be valuable or reasonable or logical. And on this day, I remember hearing these noises. I didn't know what she had done. She was physically clumsy, and would often like refuse to do things. But I just remember it being so obvious to me as a tiny toddler that whatever she was being punished for, she couldn't help. And I remember sitting there with that mailbox and looking down at it, and I was holding the cylindrical shaped block, and I was like, it's like she's the round shape, and they're trying to shove her through the square. Why are they doing that? She didn't have a clear diagnosis, so she was misdiagnosed with many of the wrong things, like schizophrenia, like bipolar, things she didn't have. Instead of somebody saying, like, "we're not sure what this is, let's try this", It was all "you have this wrong thing, let's give you this treatment that's gonna completely take your time away from you and mess up your life,". My next memory is like, I'm in fifth or sixth grade. Say I'm 10. My sister is in middle school. We're sitting at the breakfast table, and there is a very uncomfortable and pregnant silence. Because my sister had actually been away at a residential treatment, and she had been sent home early, so we were back at the breakfast table as a family, but she sort of wasn't supposed to be there. And I remember looking over and watching her attempt to spoon cereal to her mouth, and she was so shaky that she couldn't get the spoon anywhere near her face. I had seen her over medicated already at that time, but I remember wondering, Is she shaky because of medications they gave her, or is she shaking because of what happened to her there? And then I remember her saying in this really slurred, like mouthy speech, but like unmistakably defiant, like "I'm never going back there". And I just remember also thinking like, it's really bad ass that she got herself kicked out. There were so many times as a kid I just felt like, where is the person who's gonna like, stand up for her and help us find the right next step, rather than like, refer her to some other specialist? To me, it just seemed like everybody was passing the hat to somebody else.

Emily Silverman  

It wasn't just that people were passing the hat. Alexa was realizing that there was this Jekyll and Hyde effect where teachers and parents, who she normally thought of as really friendly, would suddenly morph into unrecognizable versions of themselves, much more eager to punish her sister, than to try to understand her.

Alexa Miller  

I remember one day I had been excused to go to the restroom, and I saw the classroom door fly open, and this teacher, who I always thought was really nice, had my sister by the shoulders and threw her up against the lockers. And you know, this is a person, like, three times her age, his face right up against her face, and scream like he yelled like, "from now until you are picked up, you will not speak,". And I can, like, never unsee the sight of my sister's face like wincing from this grown up screaming in her face. I finally did learn some of the detailsof her case. I remember in middle school, we had one of those shared family computers, and I remember one morning before school, I was like sneaking in a game of Pac Man, and I saw this new file on the desktop. Of course, I clicked it, and it was a letter to a new doctor, an adolescent mental health specialist, and it outlined my sister's complete medical and behavioral history through the voice of my dad. I just remember being really shocked, because my dad, he would always say, "as a scientist, I am never certain," you know, I just remember like hearing his voice in the writing and being like, Wow. I have had this question my entire life. Why does she behave this way? And in this narrative that's treated as if it's already known. And I think that was the very first time I began to see uncertainty as a safer bet than false certainty. Or maybe it's when I started to really get how dangerous false certainty was and how prone, even those people who really have a very well formed belief system and sense of professional identity, how quickly that can fall away. Finally, in her early 20s, she was diagnosed by a nurse and a state social worker with Asperger's, which is the closest thing to what she has.

Emily Silverman  

A quick note from Alexa, since her sister's diagnosis, the word Asperger's has fallen out of favor, but that's what it was called at the time.

Alexa Miller  

That was the first time the whole family had this feeling of like, it all makes sense. You know, we could hear the angels singing. We could look at a laundry list of characteristics and be like, that's her. That diagnosis got her off of a lot of the wrong meds. It lifted some stigma. Sometimes diagnoses come with more stigma, but for her, it lifted stigma and really just allowed her to know herself, so she could care for herself and advocate for herself and begin a much better trajectory. 

Emily Silverman  

But the years of being misdiagnosed and all of the harm that ensued continue to leave lasting marks to this day.

Alexa Miller  

It wasn't just the Asperger's or the the autism spectrum, it also was other things, like she has a lot of anxiety from all of the abuse she received over the years. It's not being on the autism spectrum that are the things that debilitate her, because what came with her experience was developmental trauma disorder, which is when somebody as they're growing up through their early childhood development years, there's a repeated trauma over and over and over again. And I will say, like every single time, her health requires her to, you know, visit the doctor, it's traumatic every single time. And that is concordant with what we know in research about people who have experienced harm from medicine.

Emily Silverman  

Today, Alexa's sister is living independently and doing really well, but these early experiences laid the groundwork for Alexa's career. After college, Alexa went to art school in London and found herself drawn to projects that blend art and medicine. One day, while flipping through a medical textbook, she noticed a black arrow pointing to a scar, a purely clinical detail with no context about how the scar came to be. It struck her that every scar has a story, a history that goes much deeper than what the textbook shows. And so she created a series of paintings about scars, close up images of them as landscapes of experience accompanied by the stories behind them.

Alexa Miller  

It also was striking me more and more that I had this aspiration to make impact in medical learning. You know, I had experienced a shadow side of poor care and its impact on life and family, and so it was like a moment of recognition, like, oh, I want to work on this. There's stuff for me to explore here, and I actually feel really good when I'm doing something about it. 

Emily Silverman  

She found her way to Harvard Medical School, where she helped create the course "Training the Eye: Improving the Art of Physical Diagnosis". At first, the focus was on helping frontline clinicians hone their visual observation skills. But over the course of her classes, she noticed the theme of uncertainty kept coming up again and again, so Alexa dove deeper into this topic, eventually creating a whole curriculum about it. We'll get into that in the next episode. But first, let's get into some basics about uncertainty.  So first, let's start with some definitions. So Alexa, how would you define uncertainty? 

Alexa Miller  

Uncertainty is commonly defined as the subjective perception of ignorance. So it's knowing that you don't know. But uncertainty is not in the physical world, outside of us. It's inside of us. It's an internal experience. It's a mental, emotional experience with stress and anxiety. It can be physically very uncomfortable. It can be mentally so uncomfortable, especially the more that the information or the resolution is needed. You know Maggie Jackson's book "Uncertainty" opens with a chapter called "Mind on Fire". But that feeling of like my brain is burning up can be the experience of uncertainty. And I think for doctors, especially who work in a knowledge economy where, to be very crude, value is determined by expertise. And so doctors are supposed to be certain. There's a lot of pressure to be certain. There's the legal pressure to make calls, and at the same time, those knowledge economies are also undergirded by defensive practices, which just makes that worse. In that situation, uncertainty is particularly stressful.

Emily Silverman  

Maggie Jackson, who we had on the conversations series to speak about her book "Uncertainty", had a great quote from American philosopher and psychologist William James. This is a quote from 1896 and in it, James is describing what certainty feels like. So not uncertainty, but certainty. And he writes, "we know, and we know that we know. There's something that gives a click inside of us, a bell that strikes 12 when the hands of our mental clock have swept the dial and met over the meridian hour,". And I loved that description of certainty, this sort of like snapping into place, and how satisfying that can be, compared with descriptions of uncertainty, which Jackson talks about in her book, which comes from a study where participants were asked to describe what it feels like, and they were talking about a feeling of wandering, a feeling of exploring images of the wilderness, or feeling on the edge or not quite in control, and how when you're in uncertainty, your brain is kind of in this heightened, activated state, like very, very primed to take in and integrate new information. Was wondering if that resonates with you? This feeling of certainty being like, really solid, and uncertainty feeling looser.

Alexa Miller  

So we talk about diagnostic accuracy a lot. Accuracy doesn't mean like to be right. Accuracy comes from "acura", which means to meet or to run together. So it's kind of like when things align, or when you get that experience of affiliation, when like, "Oh, your understanding of this meets my understanding of this", that's like, click. That's accuracy, and that's so much of clinical diagnosis done well, and that's not actually certainty.

Emily Silverman  

Yeah, that's so interesting that in situations of high uncertainty, accuracy isn't necessarily getting it right, like House M.D, it's more about getting on the same page. 

Alexa Miller  

Uncertainty should be eliminated as much as you possibly can. You have to do that. However. We also need to be able to live with uncertainty, to adapt to it, to communicate about it, to communicate and connect in it a lot more and recognize that some uncertainty is not ever going to go away. It's a very pervasive and omnipresent part of life and of clinical practice and actually, that's a good thing. Because, that activated state you described, that is where we learn. You know, the question is not, does it feel good or bad, or are you coming from love or fear? The question is, is that response to uncertainty adaptive or maladaptive? In other words, is it appropriate to the situation and what the situation needs?

Emily Silverman  

Yeah, this brings up so many questions for clinicians as we move through our practice. 

Alexa Miller  

Absolutely uncertainty itself is like a body of knowledge with a set of competencies around it.

Emily Silverman  

Over the course of this series, you'll be hearing stories from clinicians and patients who are in the wild, wild wilderness of uncertainty. We'll explore how uncertainty shapes medical decision making, patient care and trust, what happens when uncertainty is handled well and when it isn't, and how we can work with uncertainty instead of against it. Here's a glimpse at what's to come in Uncertainty in Medicine.

contributor 1  

I remember talking to my sister on the phone before I opened the email, they had those results, and I was just crying, like, what if I'm not allergic to my implant? Like, what is happening to me?

contributor 4  

I remember, looking up at these amazing old oak trees and thinking, is this the last few I'm gonna have?

Speaker 1  

She's like, pre opping me on a computer, and she's like, so you're ready to have this surgery? And I was like, no. She just called to me and then just went right back to her computer and kept ready.

contributor 2  

I will never forget one orthopedist who when I didn't improve on the basis of his diagnosis and treatment, said to me, you know, patients like you are really unsatisfying for doctors.

Speaker 2  

I was just starting to think about the fact that, you know, we make bets all day long. Is this bite the right bite? Is that one bite too far? Should you stop that blood vessel from going to the tumor, knowing that it might be going to some critical brain structures in a way you can't understand or see. Those are the kinds of decisions that you can't really read about in a book.

Alexa Miller  

We talk about in medicine, we use a shared decision making model. We're sharing all the information and come to a decision together. It's not really how it works

contributor 4  

When people come in with kind of vague symptomatology and gaps in the history, I would just go straight Joe and say, now tell me what's really wrong with you, and out it would come.

Emily Silverman  

Thanks for listening to The Nocturnists Uncertainty in Medicine. Our core uncertainty team includes me, Emily Silverman, the Nocturnist head of story development, Molly Rose Williams, producer and editor, Sam Osborn and our uncertainty correspondent, Alexa Miller of arts practica, our student producers are Claire Nimura and Selin Everett. Special thanks to Maggie Jackson and Paul Hahn. Our executive producer is Ali Block. Our program director is Ashley Pettit. Our original theme music was composed by Asche & Spencer, and additional music came from Blue Dot sessions. Artwork for Uncertainty in Medicine was created by Eleni Debo, who is represented by folio illustration and animation agency. The nocturnist Uncertainty in Medicine was made possible by generous support from the ABIM Foundation, the Gordon and Betty Moore Foundation and the Josiah Macy Jr Foundation. The nocturnist title sponsor is the California Medical Association, a physician led organization that works to keep the doctor patient relationship at the heart of medicine. To learn more, visit cmadocs.org, the nocturnist is also made possible by support from listeners like you. In fact, we recently moved over to substack, which makes it easier than ever to support our work directly. By joining us for a monthly or annual membership, you will become an essential part of our creative community. If you enjoy the show, consider signing up today at the nocturnists.substack.com if you enjoy this episode, please share with a friend or colleague. Post on social media and help others find us by giving us a rating and review in your favorite podcast app. I'm your host. Emily Silverman, see you next week.