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  

John Brush is a cardiologist who spent years in the cocoon of academic medicine. Medical school, residency, rounding with teams, a fellowship at the NIH, teaching at Boston University. When he made the shift to private practice, he thought he was prepared.

John Brush  

One of the things that just sort of struck me first when you go from academics to private practice, is, first of all, you're working totally alone. You can't lean on other people. You have to deal with the uncertainty by yourself. In private practice, you're kind of a lone ranger out there, whereas before, you were surrounded by people and dealing with it and discussing it and what have you, and it sort of softened the edge of uncertainty. But when you're in private practice alone, say seeing a patient in the middle of the night by yourself in an emergency room, trying to sort out what the heck's going on uncertainty sort of hits you like a ton of bricks.

Emily Silverman  

No one had prepared him for what it would feel like to be out in the wild in the academic setting, he was surrounded by experts, talking through cases, weighing options together, operating in a system that gave the illusion of control. But now in private practice, uncertainty wasn't just an academic subject to analyze and debate. It was something to survive.

John Brush  

There's an enormous amount of uncertainty in medicine. An enormous amount you just don't know.

Emily Silverman  

And that weight, the burden of facing down the unknown alone, sent him searching. 

John Brush  

I started reading in the literature about uncertainty and cognitive science and probability and logic and all of that, just trying to sort out how people deal with uncertainty. 

Emily Silverman  

He didn't find clarity, but he did find something stranger, something akin to faith.

John Brush  

I just started to think about the fact that, you know, we make bets all day long. I'm betting on the fact that this person is having this diagnosis or that diagnosis. I'm betting on the fact that you know giving this prescription versus not giving this prescription is going to make this patient better, not worse. You're betting all the time. We deal with the uncertainty by making bets. We deal with probability. Probability is uncertainty quantified. There are too many missing pieces to most of the problems, and so you can't logically build it like an engineer builds a bridge. You got to make some jumps, and you got to, you know, you got to make some estimates, and you gotta make some assumptions. And you know, the whole point of it, the whole point of all of this, is uncertainty.

Emily Silverman  

And that was the revelation that medicine isn't about mastering uncertainty. It's about learning how to move forward in it, how to have the courage to jump when you don't know where you'll land. This is the Nocturnist: Uncertainty in Medicine. I'm Emily Silverman. Today we have three stories of people who learned how to move forward through uncertainty by choosing to act, choosing not to act, or having no choice at all. In the fog of not knowing each finds a way to take the next step. Two patients arrive on Dan Donoho docket, both with the very same type of specific brain tumor called a glioma.

Dan Donoho  

It's a kind of tumor that grows from the brain itself, and specifically from the deep central parts of the brain as well as the nerves that bring information from the eyes to the brain. 

Emily Silverman  

The problem with this type of tumor is that Dan can't fully remove it without incredible risk.

Dan Donoho  

This is a difficult area for tumors to grow out of, because it's extremely perilous for us to try to remove these tumors and not face a very severe injury to the parts of the brain that govern sight of course, but also very important functions, consciousness or basic regulatory functions of the body.

Emily Silverman  

Meaning that if you remove the tumor entirely, you could damage or cut off blood flow to crucial parts of the brain. But if Dan does nothing, the patient must rely on chemo and radiation treatments that may slow the tumor's growth, but can't stop it entirely. Plus, as the tumor progresses, it can affect vision, cause other types of brain damage, or block fluid pathways, outcomes that may ultimately improve the fatal.

Dan Donoho  

So the the biggest uncertainty and the biggest challenge in in cases like these, is how far you should go, how aggressive you should decide to be.

Emily Silverman  

We should note at this point that Dan is a pediatric neurosurgeon, and so both of these patients are children. 

Dan Donoho  

Uncertainty for us is is hard to parcel out, because it's part of every single thing that we do. It's a decision, if you take a child to the operating room, that extends through every moment of the surgery itself. These are always difficult tumors to diagnose and find in children. And this one was no different.

Emily Silverman  

This was the first of the two patients, a 10 year old girl.

Dan Donoho  

She came to us with fairly severe headaches and some concern for blurry vision in one eye, and once the radiologists saw the report, they immediately sent her into the emergency room without much explanation, as these things were typically done. So we have a scared family that we're meeting in the emergency room for the first time. Who doesn't really know why they're there. They don't really know what to expect, but because she's relatively well in the way that we parse these things out in the emergency setting, sitting up, taking in the scene, looking around her mom, trying to amuse her. But it's cold, it's scary, it's bright in a very unnatural way. We have to do this delicate dance of thinking about the child and how old they are, and, you know, she needs to know something. But how much can and should you tell that's what we'll we'll walk through the parents all the same questions everybody always asks, you know, "is this cancer?" Yeah, is it? "Is it a bad one?" Well, it's in your kid's head, so yeah.

Emily Silverman  

And then not long after, Dan encounters another patient, this time a boy.

Dan Donoho  

For the boy, he'd already had a biopsy done in another hospital in another country. I mean, he was coming to us to try to salvage, maybe to do what they couldn't or wouldn't do overseas. And he was, he was quite a bit sicker, so he was a lot sleepier, nearly to the point of needing to have a machine to breathe for him, and just generally, in a lot worse condition. His tumor had built up a much larger size, was pushing on the brain a lot more and causing a buildup of the brain's fluid where it couldn't circulate around the blockages that were being created within the middle of the brain by the tumor.

Emily Silverman  

This patient was sicker, the tumor was larger, more progressed, already pressing on the brain. The risk benefit equation was different. Surgery was less likely to help, and it could make things worse with both patients, Dan faced the same dilemma. He had to make a choice. He had to take a leap in an evidence free zone.

Dan Donoho  

And there's never a one size fits all answer. Sometimes the right answer is to go ahead and try to remove as much as we safely can. And sometimes the right answer is to take a small piece, get its molecular and genetic profile, and let the chemotherapeutic drugs do the best job that they can. How much risk should you take? What percentage? How far should you go? 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, so that you can remove more of the tumor? Those are the kinds of decisions that you can't really read about in a book, and you have mostly your own experience and judgment to go on.

Emily Silverman  

And this is so different from how patients imagine it. They're expecting clear cut, black and white, yes or no. They want there to be an answer. And the truth is, physicians want that too. 

Dan Donoho  

I think we all try very hard to share that uncertainty with families and to bring them into the decision making process. But in my opinion, ultimately, we're responsible for that choice much more so than the family and how we explain things, how we convey levels of risk and certainty in many cases, guides their choice pretty heavily, and a lot of that responsibility stays with us.

Emily Silverman  

And so the decision is ultimately in Dan's hands. The uncertainties are, what they are, what can be known is known. Place your bets.

Dan Donoho  

I think we'd like to pretend that it's a very cold and calculating decision, but as as everyone who makes any decision in the world knows that there's no such thing, and I'm not sure if there should be,

Emily Silverman  

And that's because the bets Dan places aren't just based on risk percentages. They're also shaped by something harder to name, the emotional currents that pass between people, the sense you get in a room, the signals of trust or fear or hope.

Dan Donoho  

There is this intuitive sense and this human interaction that happens with families, where you get a sense of what their preferences might be, and you have an overall understanding and something you can't quite put into words of what you should do, and those are often what helps you make those decisions. That is the human element of medicine, and I think that's really precious. So sometimes the best decision in these cases is not to operate and that's always the hardest decision. It's much easier to go to the operating room for almost any problem than to not operate for almost any problem. We love action. We love doing things. That's, you know, it's not called the neuro, not surgery profession. So going to the operating room is a very easy choice, and it's often the right one. But in this case, I didn't think so. So

Emily Silverman  

He ended up operating on the girl and not operating on the boy.

Dan Donoho  

The uncertainty of not operating on a child in one of these situations that that stays with you, because it's always an open door, right? You could always call up the family tomorrow and say, "Hey, Mrs. Smith, you know, I think your kid needs surgery." And they'd say, "Well, you know? Oh, weird, but okay, right?" You know, that makes sense. It's a really unbalanced dichotomy where one choice removes all doubt, and there's the uncertainty in the moment of how well you can execute, but at the end of that operation, that's it, that's over. You know, there's only learning from it, but there's no point in dwelling on it. On the other hand, I think it's the patients, the patients you don't operate on, but could have that always lingers. I don't to this day, know which one is the right choice. Maybe I switched them. Maybe I got one wrong. Maybe I got them both right. I guess I've walked through both doors and I still don't know what the right answer is, and I'll probably do it again another 100 times, and I still might not be any wiser. Ultimately, we'll never know. Only we'll know the choices that we made. 

Emily Silverman  

Meet Dan, a different Dan. Dan Mahoney,

Dan Mahoney  

I'm a Pediatric Palliative Care Physician at Texas Children's Hospital in Houston, Texas.

Emily Silverman  

Several months ago, Dan got a call from the ER. He said he was surprised he wasn't even on shift yet. He almost never gets calls from the hospital before he comes in.

Dan Mahoney  

I was actually getting ready for bed. And I got this call from the ER that there was a 19 year old, well known from prior admissions who came in looked like it was bacteremic, and was telling anyone who would listen that he did not want treatment, that he wanted to be allowed to die. 

Emily Silverman  

And the ER team was kind of freaking out. They were like, can we really just admit this kid and not treat him? Is this allowed?

Dan Mahoney  

They wanted to call the palliative care team, because we deal with decision making around end of life much more commonly than other teams do. 

Emily Silverman  

In other words, the ER knew that palliative care could handle this kind of uncertainty, which felt ethical as much as medical.

Dan Mahoney  

And so that first morning when I walked in, the ICU team was very uncertain. How can we have someone here who is bacteremic and we're not doing something as simple as giving IV antibiotics, as giving fluids. And so we made sure that there was no acute depressive episode or other mental health things that we're contributing to is decision making. And when it seems to everybody that this was a decision being made by a competent and rational adult, people were still unsure about it, but they were at least willing to go along with that as the plan. 

Emily Silverman  

This ethical question was only part of the uncertainty that Dan and his team faced. The other looming uncertainty was what happens when you don't treat sepsis. They'd never just let someone die of sepsis before.

Dan Mahoney  

To not know when end of life might be coming to not know how sepsis is going to develop, and then to say, Okay, well, we're not going to do the thing that we know could reverse this, because he's decided that he's okay with this ending his life. You know, if you're going to make a decision to not treat a life threatening illness, it's really important to make sure that it's the right decision, because you don't get a do over.

Emily Silverman  

So dan went to talk to the patient, and he says from the first moment he walked in the room, he could feel the patient's resolve.

Dan Mahoney  

He had an unnamed primary immunodeficiency. Multiple teams had done workups of multiple kinds throughout the course of his life, and nothing really came of it, but it seemed to impact his GI tract extensively. He'd even been septic and had to go to the OR emergently for a complication related to his bowel. And he coded on the table, and so told us, you know, "I've had many conversations with my parents about this. I have prayed about this. I told my family on the last admission that I was not gonna do another treatment for sepsis. I've made my peace with this. I just want to be kept comfortable and be allowed to die." As those visits went on, the teams became more comfortable with the plan, but by the second or third day, people started asking, "Are we sure this is the right plan?" Because he has bacteremia, but he's not dying. Other than some pain he really was looking okay, like he's sitting there talking to people. You know, he had friends visit. He even posted things on social media, saying goodbye to people. And he was asking, you know, is it is it closer? Am I dying? You know, I think I feel like I'm dying, but I don't know what it feels like. So is this is?

Emily Silverman  

Dan didn't really know what to say. "I can tell you what it's been like for patients in the past," he said. But he never really had a case like this before. And so the team continued to hold treatment, continued to wait. On the fifth day, Dan and a social worker from the team sat down to talk more in depth with a patient as part of the dignity and dying program they offer at the hospital.

Dan Mahoney  

He told us about how he came to this decision, how so much of his life had become his illness. You know,ten, fifteen, admissions. It was, it was a whole lot of back and forth. He couldn't go to school anymore. He was like, "What? Why am I doing this?" You know, one of the things that he shared with us is, you know, other people have diseases that have names or have trajectories. My trajectory is a lifetime of sepsis that can come at any point and could nearly kill me. 

Emily Silverman  

Not only was the cause of his illness undiagnosed, but it caused him near constant pain and suffering.

Dan Mahoney  

And is that the quality of life that I want? Or do I just say at some point when one of these comes that, hey, you know what? I don't want to keep going. One of the things that he shared with us in that story is how beginning when he was in the emergency room, how many times people came into his room to try to convince him and try to change his decision for him. He said, "you know every single day, there's like this parade of people who think that I'm making the wrong decision, and they're not me." At this point, we're five days in, and he has bacteremia and is not otherwise septic and doesn't really appear to be dying. So, you know, at five days in no food, no water. You know, we were wondering, was that a true positive on the culture, or was it a negative culture? But yeah, I think it was. Two of the cultures came back positive with the same bug that had nearly killed him a couple times before. So he really did have bacteremia. It just didn't actually turn into sepsis and didn't end his life.

Emily Silverman  

The next day, Dan arrived to learn that overnight, the patient had changed his mind. He'd been offered to start on antibiotics and said, "okay," .We can't know what the patient was feeling at that moment, but clearly there was a change of heart, and within a few days, he was clear of infection and discharged from the hospital. He's still alive today.

Dan Mahoney  

The longer I do palliative care, the more tolerant I have become of uncertainty. There is so much that we cannot control and when and how end of life happens is one of those things. Even when someone is on multiple types of technology supporting them, if we make a plan to turn those things off, we have a conversation with the family and with all the teams to say, "Okay, what do we do if this does not result in end of life?" I think as a team, we felt good, like we had been able to provide good palliative care for him, and that whatever uncertainty he had about approaching end of life, he was able to work through it.

Emily Silverman  

Our final story is from Kevin Lally, and it's different, because it's not about a doctor choosing to act or to not act in uncertainty. It's about what happens when you're the patient, and the choice isn't yours to make.

Kevin Lally  

I had had two transplants, and I was getting a little bit tired of being on dialysis, and it was, you know, keeping me alive, so I put out the call to folks to donate a kidney. After two transplants, I had some antibodies developed, so I was limited in who could be a match for me. So colleague is going to donate. We've talked about it. She and I sit down for coffee. She doesn't have kids, and she tells me that giving me a kidney feels like a way to give life and that she's excited about that, that it feels like a calling to her. We've scheduled the surgery, she's passed all the tests, and we have the final cross match, and I'm expecting the phone call in the afternoon, and I'm in a doctoral program at the University of Minnesota, and sure enough, I get a phone call from my kidney nurse, Julie. And I've told my class that I'm going to get this phone call. That's the last thing. And then the surgery is scheduled for a week and I'll be out for a little bit. So the phone rings. I step out into this hallway, and I answer, and I'm eager to, you know, talk to her. I can tell right away that something's wrong. She just starts by saying, "Kevin, I'm so sorry the cross match was positive. We can't have the surgery," and my surroundings kind of faded. I felt this blast in my chest that radiated out through my body. I felt this metallic feel in my teeth. And then she said something, and I hung up, and I paused for a moment in this hallway. The light's fluorescent. Somebody walks by me. The light had changed. When she said that the light changed, the sound of the person walking past me changed. I went back into the room in tears and said, "I have to go. I'm sorry. I have to leave". And I biked home. I biked from the U across the river, across the Mississippi River as March. So it was it was kind of cold. It was maybe forty, forty-five degrees, and it was windy. I remember my bike moving in the wind, biking cross bridge, and I stopped because there wasn't anything else to do. I stopped because what else was there? And I stood there looking at the river, and the wind was blowing, and it was it was like it wasn't it wasn't touching me, like the world around me wasn't available to me. It wasn't accessible. I had this clear sense that this transplant was was the thing that was happening, and that it offered a certainty. And when that fell away, it was like all of everything else in my life also fell away. I fell away. My sense of what it meant to be me, my sense of what tomorrow was, my sense of my job, my relationships. I hadn't ever really confronted this idea that I could just be on dialysis, that could just be it for me. It opened up the possibilities, a number of possibilities I hadn't allowed myself to consider. And a friend of mine without talking to me, created a Facebook post of my story with my picture on it saying, you know, "Kevin needs a kidney. Can you help him out?" And it kind of took off. And I have never in my life had any confidence that those stories on social media did anything for anybody, and I was pretty self conscious about this. It was shared hundreds and hundreds and hundreds of times, and then three months later, a random stranger, someone my brother went to college with and hadn't been in touch with for years, got tested and was almost a perfect match. And that's where my third transplant came from, and I've been in pretty great shape since then.

Emily Silverman  

Thanks for listening to the Nocturnist: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 clarineur and Celine Everett. Special thanks to Maggie Jackson and Paul Han. Our executive producer is Ali Block. Our program director is Ashley Pettit. Our original theme music was composed by Ashton Spencer, and additional music came from Blue Dot sessions. Artwork for Uncertainty in Medicine was created by Ali depot, 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 CMA docs.org, the nocturnist is also made possible by support from listeners like you. In fact, we recently moved over to sub stack, which makes it easier than ever to support our work directly by joining us for a monthly or annual membership, you'll 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.