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.

Emily Silverman: Hey, everyone, it's Emily. As you may know, we wrapped our Uncertainty series last week, but this week, we've got a bonus episode for you. It features me and our Uncertainty correspondent from the series, Alexa Miller. A few weeks ago, the ABIM Foundation invited me and Alexa to do a webinar where we shared some reflections on the series, and it turned into a really thoughtful conversation. Give it a listen. We hope you enjoy it.

[music]

Pamela: To start us off, I'd like to ask everyone in the audience if you could please put one word in your chat that comes to mind when you think about uncertainty in medicine. Emily and Alexa, when you see these words, what comes to mind for you? I want to say, first of all, my word is angst, but what comes to mind for you? Maybe you can each share a moment, big or small, when uncertainty in medicine really came to life for you. Stressed, I see anxiety, I see concern, hesitancy. Let me start with you, Emily.

Emily Silverman: I'm definitely seeing a lot of those words: angst, stress, anxiety, concern, and that's super normal and super common, and I share those feelings. There's a lot of angst, I guess you could say, when it comes to sitting in uncertainty. One of the things that I learned in working with Alexa and reviewing a lot of the uncertainty literature and scholarship is that even though there's a lot of negatively valenced emotions associated with uncertainty, there can also be positively valenced emotions associated with it, and that was eye-opening for me because it really helped me shift and reframe the way I think about it.

For example, if you're reading a detective novel and you don't know what's going to happen next, there's a sort of excitement that you might feel. If you're a patient in a clinical trial and you don't know if you're on the placebo arm or the treatment arm, and even if you are on the treatment arm, you don't know if the treatment works, but in the absence of other treatment options, just being inside that cloud of uncertainty can offer a lot of people feelings of hope.

I think there's no good or wrong response to uncertainty, but there's a huge diversity of responses. I think it's very quick to just go right to the negative because that's so in our experience. For me, it was really illuminating to remember that intellectual stimulation and excitement and mystery and wonder and hope, and there's that whole other facet of it. Maybe I'll kick it to you, Alexa.

Alexa Miller: Thank you. I love that comment because I think that so much of health and health decision-making is being in uncertainty, and of course we want to reduce the uncertainty as much as we possibly can, and we get our agency from making the right decisions with the best information we might have, but it's fundamentally a scary, stressful place and often a very lonely place. At the end of the day, uncertainty, while we always want to reduce it and learn what we can, it's never fundamentally completely reducible or usually not.

In fact, we need that uncertainty for that hope, to drive learning, to drive action, and to drive continually improvement. That's one of, I think, many reasons why the topic is so important and interesting. I guess I appreciate your question, Pamela, about moments because uncertainty, really, I think it's about millions of moments, tiny moments where information gets communicated well or inaccurately, and where decisions get made consciously or not, or where hope, the door to it is open and the journey is accelerated, or the moment where it's shut down and it's so devastating.

I think it's hard to just choose one moment. In the podcast, I talk about moments around my sister's misdiagnosis, which happened as a result of medical knowledge itself being incomplete and that not being recognized, which is a very common story, especially for women and for marginalized populations and diseases that are under-researched. I will say my precursor to that is as an artist and as somebody who had a big life in music and playing music with other people, and in those contexts, uncertainty is a context for the generation of insights and for the generation of knowledge and decisions.

I think that, for me, early experiences in art that is the ideal, that in uncertainty, we can be aligned the way a band of musicians shares a brain and knows how to improv together, and we can find the right next step in an almost playful way. I think that's plenty to that question. [chuckles]

Pamela: That's great. Thank you so much, Alexa. When I think of as a patient and going to visit my physician, I'm looking for certainty. I don't want to hear more uncertainty. I've got plenty of that when I walk into the doctor's office. In context to modern medicine, why is it important to build trust in that relationship with the patient? Emily, I'll come to you first.

Emily Silverman: Something Alexa really helped me see in working with her is that these little moments come up all the time in clinical interactions. They're very sensitive moments, and they're moments where, if they're handled skillfully, can lead to some of the best, most healing moments in medicine. Even if the answer isn't immediately within reach, even if the prognosis isn't hopeful, those moments of alignment can produce really beautiful moments of healing.

If those moments are missed or botched or there's rush or there's miscommunication or a lack of communication or bias or any number of reasons why those moments don't land, then it can lead to harm. In some cases, it can be tremendous harm. I think when you're talking about the connections between uncertainty and trust, I see them as really, really strongly connected. We see this at the level of individual doctor-patient reactions in the exam room. We also see this at larger levels when we're talking about how the lay public responds to the scientific community and how the scientific community responds to the lay public. It happens at all different scales.

I think being open and transparent about uncertainty when it is in the room is really important. That's something I've actually changed in my practice since working on this series with Alexa. I still see patients part-time. I just find that the word uncertainty is coming out of my mouth a lot more often than it used to. It doesn't mean that you're throwing your hands up or surrendering. It's more just acknowledging that it's there and then offering that trust and guidance that I'm going to help you work through this, and we're going to do that together.

Pamela: It's transparent. It's setting expectations. Emily, I have to tell you, when I was rehearsing and working on this, I set off my Alexa a couple times.

Emily Silverman: [laughs]

Pamela: I had to unplug. You might want to unplug that.

Emily Silverman: If you don't mind, I might [crosstalk]

Pamela: While you're doing that, Alexa, could you answer the question about why it's so important to building trust?

Alexa Miller: Absolutely. I think from this moment forward on Zoom, I'll just notify everybody to unplug their Alexa-

[laughter]

Alexa Miller: -so don't worry about that. You bring up such an important point, Pamela, that when patients go to their doctors, they're seeking certainty. There's an aspect to the challenge of this where they want to believe in their doctors. You can be the most humanistic, compassionate, and uncertainty-loving person in the world, and when it's time to choose your surgeon, you want the most arrogant-- [laughs] I don't know. There's a certain kind of confidence that is also important to people believing in each other.

As Emily said so beautifully, and I have to say, Emily, what you just shared is some of the most amazing feedback, and that really moves me. There's, I think, more than the feigning of certainty, especially in false certainty, patients need a real honesty. There are so many barriers to a basic honesty that clinicians face in their training, in culturalization in the US prior to even getting to medical school, and in systems practices, especially systems that are so gripped by insurance and by defensive practice and non-disclosure agreements, and who holds a responsibility and risk. All of these things can be so debilitating and disadvantaging to clinicians being honest. Now, that's not to say they can't be.

I'm thinking of the research of Dr. Gordon Schiff, who's at Brigham in Boston. He combed through hundreds and hundreds of cases of uncertainty communication and found that doctors typically don't disclose uncertainty because they fear litigation. What his research found is exactly the opposite. It's when it's disclosed, but with a really honest, human-to-human, skillful way, that it prevents it, even in error. As Emily's talking about shifting into the space of here's what we know, here's what we don't know, here's what we're going to find out, we're going to figure this out together, we're going to be with you, patients want that more than that false feigning of certainty so much more.

Pamela: Tell us about the Uncertainty in Medicine podcast. What has the response been like, and why is this topic so timely right now?

Emily Silverman: Part of the reason why the topic is timely is the ABIM. Credit where credit is due. I think the fact that you all put out this call and have been so proactively addressing the fact that we don't talk about uncertainty as much as maybe we could or should in medicine is a testament to all of you and your picking up on that in the zeitgeist. For us, we really grabbed that and ran with it and collected so many different stories in many different ways. We put out an open call. We received a lot of stories from The Nocturnist listeners in that community.

We also did some proactive going out into the community and finding people and asking about uncertainty. We conducted dozens upon dozens upon dozens of interviews with both clinicians and patients and researchers and put together this series. I have to say, I think we're about five episodes in now, four or five episodes, and the response has been really positive. I'm getting a lot of texts and emails and messages from people who are expressing that the series is giving voice to a lot of that anxiety and angst that they've been feeling, whether their early career, mid-career, or late career, and is helping them think about it in a new way.

I find that, sometimes, something as simple as naming it [chuckles] can go a long way, and then beyond naming it, really talking about, and Alexa can speak more to this, definitions and responses and primary responses and secondary responses. There's a whole literature on this. Alexa, maybe you'd want to expand on that.

Alexa Miller: Sure. I think I also just want to say thank you to the ABIM and to the Partnering Foundations for the support of this. I can see that Dan Wolfson and Leslie Tucker have joined the session today. They were the previous leaders of the ABIM who were really instrumental in identifying uncertainty as a focus area in the broader trust initiative. I just want to thank them, too.

I think there are certainly reasons for why this is so timely, but my perspective is that also there's a timeless quality to this because from its inception, US healthcare has been, I think the most generous word I have for it is under-resourced when it comes to the treatment of women and marginalized populations. Just the lack of knowledge as to how diseases present and express, and riddled with unacknowledged holes and misinformation and stereotypes. That's not to say there's not terrible misinformation and fake news out there as well. There certainly is.

As long as patients continue to be harmed from the lack of acknowledged uncertainty around those gaps in knowledge, and that there's so many hundreds of thousands, if not millions, of cases of that, and there has been since its beginning, I think this topic will be of interest. Also, in the context of the new administration's shutting down research and actually actively erasing knowledge, that is going to be making that a lot worse, especially knowledge around women's health, knowledge around LGBTQ health, all kinds of really important knowledge about the health in our society. We're going to be standing in, in future generations, far more uncertainty. I think it's of interest for that reason as well.

Pamela: I'm going to ask you a follow-up question around the timeliness, and that is, the pandemic imploded or exploded information, and people wanting certainty because it was a contagious disease. There was just so much information out there in the public. Do you think the uncertainty conversation is something that people are interested in, as we have just gone through that experience? I'm wondering how you two feel about that. Emily, any thoughts?

Emily Silverman: It's amazing to think that the pandemic hit the United States five years ago now. I can't tell if that feels like longer ago than it feels or shorter ago than it feels. It's a strange amount of time to be out from a crisis like that. Millions of people died, and people were terrified. They were terrified for themselves, they were terrified for their grandparents, they were terrified for their children. Nobody knew anything. We had never seen anything like this in modern medical history.

Of course, we read about the plague and things like that, and there are isolated outbreaks around the world of different things, but nothing so massive and global. I just want to acknowledge that it was a traumatic, difficult, uncertain time. [chuckles] For the most part, I think people were trying to do their best. I think there are definitely some nefarious actors out there as well, but I think we were trying to do our best. I think there were definitely some missteps there on both sides. A lot of misinformation circulating in the public, but I think the scientific community also made some communication missteps that ruptured trust in certain ways and in certain communities.

I think we're really still feeling that impact as we look at the way that consensus science is interacting with the public, or even this idea of consensus, the idea that science is alive: what does it mean for science to be settled, or what does it mean for science to be alive and constantly be iterating? These are really big questions and probably deserve their own podcast series. [chuckles] We can talk about that another time. Yes, I do think that the uncertainty in medicine conversation is a transitional narrative into broader conversations about trust and doubt, which, as I say, manifest on the scale of individuals in the exam room, ranging to all the way up in society.

Pamela: Thank you, Emily. Alexa, any thoughts about that topic?

Alexa Miller: I think everything Emily said, I completely agree with, and there's so much there. I guess I will say, as somebody who was studying uncertainty and teaching about it at the time, which was very strange, actually, I noticed some silver linings in the uncertainty conversation itself, in that the pandemic certainly normalized a conversation and a basic recognition of uncertainty, and activated a more pro-social approach. We became conscious of not going to events, not only to protect ourselves, but to avoid spreading possible disease, avoid hurting our loved ones and our neighbors.

I think that was actually a really major shift in the typical American individualism that so plagues us, that pro-social thinking. I heard a lot more doctors just recognizing uncertainty and getting past that to the, "We have to work together to figure this out. We're learning on the fly. We have to share information and innovate together."

Pamela: I'm so glad you both speak to silver linings, and I so appreciate it. I'm sure everyone on this call does as well. What do you think are the biggest myths or misunderstandings about uncertainty in clinical practice?

Emily Silverman: That's a great question.

Pamela: I'm going to start with Emily again.

Emily Silverman: There was something you said a few minutes ago, Alexa, about feigned certainty. People can smell that, they can tell when you're pretending that you know and you don't, or when you're feigning certainty. It's almost a way of communicating that operates non-verbally. It operates at the level of the animal body, where you'll say something as if you know, but they can tell that you don't. I think this idea that what people want is certainty, therefore we must give it to them, even if we don't have it, I think that's a myth.

I think most people know that deep down at their core. Alexa already spoke really beautifully about all the barriers that exist to honesty and transparency and communication around uncertainty in clinical medicine, ranging from just overall burnout, overwhelm, time pressure, litigation, stress and fear, gaps in medical knowledge to begin with. There's just a lot there. I think this myth that the physician is expected to show up and know everything is probably the myth that was busted most in my mind as I made this series with Alexa. I think that's something that's going to continue to evolve in really interesting ways because with the House MD, again, we opened the series with House MD, this idea of the genius, the Doogie Howser.

Even now, with technology and with AI and GPT, human beings don't have to be reservoirs of every single detail of knowledge anymore. We can outsource a lot of that to technology. Then the question becomes, if we're not Olympic memorization machines anymore, if that's not what we're valuing or what we're training people up to do in medical education, then what is our value? What is our role? Obviously, we need to have a solid foundational base. I think it's more about how we interact with knowledge, how we look out at that growing explosion of knowledge that's continuing to grow and explode every day, and how do we know how to pick up signals from noise?

I was just thinking, even, God forbid, if I had a rare disease, I'm a Hopkins-trained doctor, if I went to PubMed and searched and found different articles about that disease, I could probably read them and understand them, but it would be nothing like going to an expert in that disease, and they could put it into context, "Oh, that paper came out in 2018. We used to think that, but now we're really thinking this." There's conversation on top of the knowledge, I think, that we're a part of as well. To me, it really comes down to reimagining the role of what a doctor is, as Gurpreet Dhaliwal says in the series, moving away from this idea of them as a font of knowledge and toward a different vision.

Pamela: Thank you, Emily. Myths and misunderstandings, Alexa. Do you have any thoughts?

Alexa Miller: Yes. I guess the myth that's coming to mind, especially after hearing that, is that the answer comes from inside someone's head. Maybe the answer comes from inside the doctor's head. We know there's a group of theories called situativity theory about how we interact with the environment and with other people, that answers actually come from interactions between people and correspondences. Also, we know from how much lived experience is not reflected in the medical literature, that that's a really necessary component of the equation.

One of the things in the podcast that I'm most excited about is we have voices from doctors and from patients, too, who just really have a knack of figuring it out with their patients when in a gray area. Patients who are, for better or for worse, just in a gray area have a rare disease or something that's undocumented, that's really causing them serious trouble, and they've figured some things out and hit a bunch of walls with a bunch of doctors who just said, "You're crazy," and then actually found that doctor who could learn from them and with them and work together with them to piece things together. I think, right in this moment, I might think about it differently another time, but I'd boil that down to where the solutions lie, where the knowledge is.

Pamela: Can you speak to how physicians navigated uncertainty in the past? We touched upon that a little bit when we were talking about the pandemic, but how do you think that they should navigate uncertainty in the present? Emily, I'm coming to you.

Emily Silverman: Alexa has a wonderful framework for this, which I will let her explain in a minute. On my end, I think weaving the uncertainty conversation into medical education and training people to have uncertainty tolerance or uncertainty competence or whatever word you choose will be really important. I'm really interested in the role of technology, actually. I think decision support tools, knowledge support tools, different ways of using technology, we used to use stethoscopes, and more and more people are using pocket ultrasounds.

There's just a lot of different ways of collecting data and information and then crunching all that and making meaning out of it. Sometimes we do that with our brains, and sometimes we do that with our brains assisted with technology, and of course, we always do it in partnership with our patients and with their input. There's also a more base-level intuitiveness with which we navigate these interactions.

We just aired a story on the podcast of a pediatric neurosurgeon who's faced with two different children with the same brain tumor, and he has to figure out, do I operate? Do I not operate? He chooses to operate on one and not the other, and there's a lot of reasons for that. A lot of them are clinical and related to how the tumor is presenting. He also acknowledges that some of it comes on instinct, you walk into the room, and you interact with the patient, you interact with the family, and you just get a sense of their goals and values and preferences. That's something really human. That's hard to put language to, but making sure that we're also placing value on that skill set as well.

Pamela: Excellent. Thank you, Emily. Alexa?

Alexa Miller: I would say in a very sweeping, blunt, and probably over-generalized generalization in the past, that clinicians have approached uncertainty with an assumption that their thinking is objective and what the patient is saying is subjective. If you work in medical education, as I often do, you see tons of places where that idea is implicitly taught. A better way, and what I've put together in my BOLD framework that you can hear about in episode 2, and also if you want to learn about it on my website, artspractica.com/bold, it's written out there as well.

A better way that I've come up with after having the privilege of getting to observe and teach with and learn from really doctors who operate very differently in uncertainty with their patients is the BOLD approach. Starting with B for believe, simply believing in the legitimacy of the patient's story and taking the time to let that story land and teach you. O, observe. There's a range of skills around observing, but as Emily makes the point in the podcast, corporatized medicine is making less and less time for observing.

Actually, our observations are the very first building blocks of our knowledge, and doing that well and doing that with the instinct that Emily mentioned, and also with the perspectives of others, and balancing that to build observations. L for locating. Emily pointed out the story of the pediatric neurosurgeon and this intuitive and collaborative process of getting the patient and the family's goals. Locating the goals of the patient, locating the root cause of the symptoms that they're coming to, and really also locating yourself, locating your own limits, your own strengths and limitations. There's a whole skill set around location.

Then lastly, deciding together. Using a shared decision model, making model, or even better, a patient-centric decision-making model to decide towards those goals. I offer that, and I really need to publish that [chuckles] in addition to the podcast and on my website, just as a first principles of things that I've observed across all kinds of different disciplines in medicine, for that, a better approach in uncertainty.

Pamela: I just wanted to point out that in chat, I saw someone saying docs and nurses are humans. There is that to be concerned about and to think about, and also the term uncertainty competence, that that is going to be the next new phrase from one of the commenters, so something to think about. Again, I note that both of you do look at this as there's a lot of silver linings here in this conversation. I'd like to hear more about what gives you hope for the next generation of clinicians, looking at uncertainty or embracing uncertainty. Emily?

Emily Silverman: I think there's so much to be hopeful about in my interactions with med students and residents. They're incredible people coming from incredibly diverse backgrounds, and they all bring so much to the table and so much to offer. I think slowly we are shifting the culture of medicine. I think work like this, storytelling projects like this, the other grantees are doing really, really important work in formally weaving this into medical education. Then also looking at people who are mid-career and late career, I think there are just really vibrant conversations happening in the public square right now about uncertainty and where we're at and how we move forward.

Uncertainty and humility are really intertwined. That's something that I think moving toward is always a great goal. Technology, and I keep harping on technology, but it's hard not to in an era where I went from GPT not existing to now I use it every day, multiple times a day, and actually not having it sometimes feels like not having Wi-Fi. It's just become a part of how I work. There's just so many different ways that technology can accelerate progress.

There's a wonderful book by an author, Susannah Fox. It's called Rebel Health, and it's all about patients making use of technology and bringing ideas to their doctors, and inventing new medical devices in their garages. [chuckles] The innovation doesn't always come from the scientists and the doctors. Sometimes it comes from the patients as well. If you check out that book, there's a ton of inspiring anecdotes from people, particularly people in the rare disease community, for whom curing their disease doesn't have a big financial incentive.

They take matters into their own hands and do all sorts of creative things, and bring those ideas to their doctors. There's just a lot of exciting things happening. I think as down as we can feel about some of the darker forces and darker things happening right now, always making sure to hold that dialectic and keep an eye on the silver linings is important as well. I hope it's not a plan, but it's still good to have.

Pamela: It's necessary for a plan.

Emily Silverman: It's the first step.

Pamela: That's exactly right. Alexa, your thoughts?

Alexa Miller: I want to thank Harv Hellerstein for pointing out in the chat that doctors and nurses are humans. I thank you because there's something about this conversation that's very hard because doctors and nurses, as the primary operators, for lack of a better term, and the front line of these interactions with humans, the things are coming out of their mouth, and they're the ones who patients experience harm by. If you do a 101, if you read the To Err is Human report, which came out in 2015, or you take the most basic course on systems errors, all errors that happen are happening as a result of misalignment two or three or four rungs up at the top of the hierarchy.

In episode 3, I believe, or 4, we interview patient safety expert Ronald Wyatt, who working with The Joint Commission, reviewed thousands and thousands of cases across hospitals in the entire country, and found that really the number one most common bottom line cause of these events are leadership that is disconnected from values of patient care and completely unaccountable to what actually happens. That is the issue.

While we need to educate doctors and nurses and the people in the space of human interaction as much as we can about how to communicate about and in uncertainty, the fault of the prevalent errors that plagues our country and our world is way upstream. Something that gives me hope actually are getting to work in certain leadership programs where I see a lot of doctors connected to the needs of their patients and communities and connected to the critical, beautiful practices of great patient care, stepping up into leadership. That's what we most need to change this, and also to be creating entirely new and different kinds of systems that are wired differently from the ground up.

Pamela: Excellent. Thank you so much, Alexa. That was actually my last question before we go to Q&A. I am going to ask Randall to come off of mute and start us off with the first question.

Randall: Thanks, Pamela, and thank you, Alexa and Emily, for just really a thoughtful and wonderful conversation. One of the first questions that we got from the chat was, "I had a patient whose girlfriend was asking for a psychiatric diagnosis for him. It was not possible for me to be 100% certain. As a specialist, a psychiatrist, I feel there is a huge pressure with the model of one-off consults. How do you help some patients or relatives who really don't like uncertainty?"

Pamela: Emily, we're going to start with you, and then we'll go to Alexa.

Emily Silverman: There was a lot in there, and one of the phrases that really stood out to me was the phrase one-off. That reminded me of the episode we did on family medicine primary care training. I don't know if anyone in the audience heard that episode, but in summary, they talked a lot about how these idealistic med students were coming to family medicine residency and saying that they were going to go into primary care, and then they finished residency, and then they would go off and specialize. This question came up of, why? Why are we not able to retain people in primary care? One thing that they found was that the residents were just being dropped into clinic on random days.

Most of their time was in the hospital. Then they would do a half day of clinic here and a half day of clinic there. They never really got into a rhythm in clinic. There was also this sense that even though patients are sicker in the hospital, there's a lot of certainty in the hospital. Even in the ICU, you control every little drip of what goes into the patient, but in primary care, there's so much you can't control about people's life circumstances and how that influences their health. These residents were just so overwhelmed by the uncertainty and had no time or narrative continuity and relationship building with their patients, that they just threw their hands up and said, "This is too hard. I'm going to specialize."

I think what you're saying about the barriers to working through uncertainty with someone, it's really you can't do it in a one-off. You can do your best in a one-off encounter, but so much of the way that we're able to absorb the anxiety and angst and impact of uncertainty is by staying in those relationships and leaning into that other knowledge or sense of gnosis that we have, just being like, "Oh, I know him. [chuckles] I know him, and I know that that chest pain, that he's not exaggerating, that that's real," or "I know that he would never say that unless." You have to have that relationship in that context.

I think especially when you're dealing with mental health and psychiatric diagnoses, which can be so difficult and so squishy, and we try to put boxes around anxiety and depression, and really, it's like, what is anxiety? It is so many things [laughs] that putting a diagnostic label can be really tough. I think the only response I would have to that is trying to find someone who you trust and who you click with, a provider. It could be a doctor. It could be a nurse practitioner. It could be whoever, and just get into a rhythm in a relationship. I think that will point you in the right direction. Alexa, I don't know if [unintelligible 00:40:57].

Alexa Miller: No, I think that's exactly the point is that knowing what you can do in a one-off and what is completely inappropriate for a one-off. I'm not sure I'm remembering exactly the wording of the question, but the patient's girlfriend, I think, suggested a psychiatric evaluation. Maybe that's something that needs to be considered. That's not to say that necessarily needs to happen. That's just something that the clinician needs to take into account as a factor, and over time, through different lenses of getting to know this patient, decide skillfully if that's necessary or not, and that might not be knowable within one visit.

Pamela: Randall, if you might take the next question, please.

Randall: I see that Daniel has his hand up. Nick, can we make it so Daniel could unmute and ask his question?

Daniel: [silence] Hello, Alexa, and hello, Emily. Nice to meet you. I had a reaction when you said, what's the first thing that comes to your mind about uncertainty, and I said, increased cost, because I believe that-- I wanted you to address it, how do you think uncertainty relates to appropriate use of services? There's somebody here from Choosing Wisely Japan, and he'd really like to know this answer as well, our friend. How do you think it relates to accuracy of diagnosis and treatment for Leslie Tucker to think about as well? If you could address that, and I think that it makes it more relevant in the policy arena when we think about what effect it has on utilization of services, appropriate and inappropriate.

Pamela: Emily, if we could start with you.

Emily Silverman: Sure. The first disclaimer up front is I'm not a health economist or a health business leader. This is not my area, so take everything I say with a giant grain of salt. I'm sure there are people probably in this room who know a lot more about the business and economics of health care than I do. The way that I tend to think about this is through incentives. I think we can bang on the moral drum as much as we want, but until the incentives are aligned, I think we're not going to get the results that we want.

If the system is built and incentivized on people getting sick and then doing things to them, [chuckles] then making money off of that, then that's the system we're going to get. On the other hand, if the system is incentivized to keep people well and to keep them out of the hospital and to keep people in health, and part of that involves having a longitudinal relationship with a clinician or clinician team or clinicians so that they can know their clinicians and be known by their clinicians, I think the outcomes will be much better and people will be in health.

Until we can get those incentives realigned, and we talked about uncertainty and time scarcity, it isn't going to help anyone, doctors or patients, to have a fast food 15-minute increment dispensing one unit of wellness [chuckles] model. That's just not how it works. It's much more human and messy than that, and a lot of that involves letting these encounters breathe and letting the story come out and giving space to the uncertainty.

Daniel: On the micro level, do you see physicians phishing? They're uncertain and they begin to order tests, phishing for some answer that is not there, or watchful waiting is more appropriate. It's this phishing phenomena that I see that leads to overuse of services because they need to nail down an answer in 100% certainty. I can't leave anything undone, and therefore I'm going to search and search and search until I can get 100% certainty. Do you see that phenomena?

Emily Silverman: I think we see both. We see overuse and we see underuse. I think of it as pulling a guitar string. I like this metaphor where you want it to be just tight enough. If you pull it too tight, it snaps, and if it's too loose, it flops around and it's of no use. [chuckles] If you over-order and you over-test and you obsess and you get anxious, then you end up finding things you don't know what to do with. It's expensive. People have anxiety. We don't want that. That's pulling the string too tight.

We also don't want to be complacent or lazy and say, "Ah, nobody knows. I'm just going to pass the buck to the next person or go talk to your primary care doctor. I don't know." Or watchful waiting can evolve into diagnostic delay and things like that. That would be like the string being too loose, where it's like, "Actually, you're not doing enough." I think finding that sweet spot where-- That's such a dance, to know exactly when to move and when not to, it's hard to describe how to do that.

We had an improvisational dancer, actually. That episode hasn't come out yet, but he talks a lot about having the dancers on the stage. Let's say you're one of the dancers and you're standing off stage, you may have an impulse to jump in too soon and disrupt what's going on, but if you wait too long, you don't get to bring your energy into the space. He describes this feeling of letting it well up in you until you can't resist anymore, and only you know in your body when it's time to walk on the stage and disrupt.

It's almost like a body intelligence in his case. I sense that left to their own devices, physicians, they develop that intelligence over time of when to probe and when to-- What's the phrase? Don't just do something, stand there. This is the art of medicine, and I think we see both. I think we see over-testing and under-testing.

Pamela: That's a great question, Daniel. If you don't mind, Alexa, we're trying to get as many questions as possible. Randall, can you share the next question?

Randall: Yes. Alexa, this is more of a comment. I wanted to get your perspective on what this attendee has shared. She mentioned that she's a rare disease patient who found navigating uncertainty to be terrifying. What she needed most were providers who could be curious partners with her. She has six specialists, and it was a huge challenge curating that kind of team. "Some doctors approach this like the puzzle that it is, while others had confident theories before spending much time with my chart or hearing from me." Again, not much of a question, but I would love to hear your perspective on that story and how it aligns stories you've heard.

Alexa Miller: I first just want to honor her and the journey she's been through and the distances she's clearly come, especially finding that team and building that team and all the setbacks along the way. The rare disease community, I think, is, I recently read like 16 million people. It's so many people. They have different diseases, but it's such a huge percentage of the population cumulatively that healthcare can do great in certain kinds of crises, but when symptoms are vague, when things are chronic, when they change and don't add up and they're in these gray areas, it can be so scary and it can be so violent.

You can be bounced around from one clinician who maybe takes time with you and then defers and refers to somebody else. That is so hard, and that's so common, and we need to do so much better there. I guess I've lost my train of thought. I had more I wanted to say about that, but-- Can you just remind me if there's anything I'm missing in that comment?

Randall: I think the only other thing was just the way the different doctors approached the puzzle, but I feel like you were touching on that.

Alexa Miller: I just commend her for finding those people and pulling together that team and letting them-- It can be this whole extra added layer or layers of mental gymnastics to know as a patient, often patients, especially in that position, are more experts on their conditions than the doctors are. There's this asymmetry that's not necessarily comfortable for doctors, and finding the ones who can be comfortable there, who can be learners, who can then jump in with the research and transcend their disbelief and be building new knowledge together.

In my teaching and in this podcast and in the people I collaborate with, I really try to shine a spotlight on the people who can do that in the BOLD framework because they're rare, but they are out there. It's just a place where it's swimming upstream of standard fair culture, but it can be learned, and it does exist.

Pamela: Thank you, Alexa. Randall, we are coming up on 2:26. I have to say that I could listen to you both for another hour so easily. You're so filled with information and enthusiasm for this conversation. The good news is, is that there is a podcast and we can listen to you more. I'm not trying to sound too much like a commercial, but really, honestly, the way that you answer the questions, your vast knowledge of this conversation, and also admitting that there's a lot more work to do around uncertainty is so compelling.

I would just like to just take a moment, give you an opportunity for the last few words. We're not going to take another question, but just then we're going to wrap up today's conversation. Emily, I want to let you go first. It's a fire round, quick, one last message that you want to leave us with.

Emily Silverman: The message I'll leave us with is, uncertainty is scariest when you're facing it alone. To the extent that we can, whether we're facing uncertainty ourselves or on behalf of our patients or in orientation to systems or the world, is finding ways to face it down with others, face it down together. It makes it so much more tolerable and bearable, and this helps take some of the loneliness out of the way. Face uncertainty together and not alone.

Pamela: Alexa?

Alexa Miller: I heard this wonderful pearl of wisdom from actually a CFO, who was a family medicine doctor as well, at a rural health system in Montana. He said, "After years of burnout, what I figured out was just be a patient advocate, because then when I'm lying in bed at night, going, oh, did I make the right decision? Did I do well by that patient? If I did my best to understand their needs and advocate for them, I did my best." I thought that was really brilliant, and it aligns with so many best practices. I guess I would just share that along with the self-compassion of knowing we're in a very imperfect, flawed, and insidious world and have so much learning and unlearning to do.

I wanted to say thank you to Emily for this work. I've been doing this work as a teacher for 20 years, and it's been a lifelong process of working through some really hard stuff that happened early on in my family life that connected with medicine. I've never actually told that story, and it was because of Emily not settling for the story that I always tell and forcing me, kicking and screaming, to tell the personal story that I did, and that has changed so much in my world.

Actually, I also want to thank my family, and especially my parents, who did not come out smelling like a rose in that story and have been super supportive and have really lived the work of learning from error. I think this has been a professional and an out-in-the-world experience, but it's also been very deeply personal at an unexpected level. I just wanted to thank everybody for that, and of course, to the Foundation for your support.