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.

Jenny: The nurse transfers the call to me, and I find myself in a video call with a delightful 80-year-old patient who's had a head injury.

Emily: This is The Nocturnists: Uncertainty in Medicine.

Jenny: I ask him, I say, "What were the circumstances?" He says, "Well, Doc, I've got this wound on my head. I got it working in my garden. I tipped over, fell forward, and hit my head on a rock, and it bled a lot. Can you just send a nurse here?" I say, "Hold on a second. Have you looked at it? What does it look like?" He says, "I don't really know. I don't know how big it is. I just know it bled."

I say, "Have you tried to look at it with a mirror?" He hadn't done that. He said, "Great idea, though." We try to examine the wound using the camera on his phone, and I get this shaky image. It's far too close-up. I can't tell what I'm looking at. It looks bad, actually, so I say, "Look, I really need to look at this wound. You're going to have to take a picture and share your screen with me."

He figures out how to share a screen, and I gasp because the wound looks terrible. It's covered in pus. There's blood trickling down. He says, "No, no, I put antibiotic ointment on it." I say, "Okay. Well, we are going to wash that off." "Oh no, we're not, because then it's going to bleed." I said, "Look, I'm there with you. We're going to wash it off together. We're going to see what's underneath so that I can give you some guidance.

Emily: This is Jenny. She's been a tele-emergency doctor for years, and says that sometimes it's hard to tell whether the uncertainty she's experiencing comes from the medicine itself, or the fact that she's delivering it through a screen.

Jenny: Reluctantly, he takes me with him through this cabin in the Santa Cruz Mountains somewhere. He finds a clean washcloth, and he says, "Well, what do I wash it with? Alcohol?" I say, "No, just warm soapy water." He proceeds to do that, and he's relieved because he says, "It's not bleeding. It doesn't hurt." I ask him to then take an after-picture, and he does. He shares his screen again, and the wound looks fine.

It is a superficial wound. Everything's great. He says, "Doc, this is great. I'm fine. Thank you so much for your time. Bye-bye." I say, "No, no, not so fast. We're not done. Remember what the nurse said to you? She said she wanted you to go to the emergency room for a CAT scan of your head." He says, "I'm not getting a CAT scan of my head. I don't need that. I am fine. I don't even have a headache."

I say, "Look, you might be okay, but I really don't know that for sure, and I'm not going to be there with you when you get a head bleed and die." Keith says, "I'm not going to die. I'm fine. I feel just fine," and proceeds to dismiss me, which is easy for him to do because he can just hang up, but he was very sweet. He said, "You've provided me a great service. Time to go."

[ring tone]

Jenny: I let him go. Of course, I've read about him for the next three days, chart-stalking him to make sure he's still alive. He's just fine. I noticed that he made a call the following day asking for a refill of medication. Really, he was fine with the situation. That made me definitely uncomfortable, but he got what he needed, which was wound care, which is really all that he was looking for.

[music]

Emily: Communication, it's central to medicine and one of its biggest challenges. There's no formula for how we relate to each other. It plays out differently in every scenario. Take Jenny, for example. She said this story is pretty typical of what she experiences as a telemedicine doctor. Uncertainty is part of every encounter. Sometimes she's the one who's more comfortable with it. Sometimes the patient is more willing to accept the unknown. Either way, she has to work within the limits of delivering care through a screen.

Today, we're exploring the gray space where medicine meets relationship. How do we communicate when the answers aren't clear? When does communication bring clarity, and when does it add confusion? What happens when the uncertainty isn't just medical but interpersonal? This episode has two parts. First, we'll explore conversations between clinicians and patients, and then we'll head into the hospital to explore how clinicians talk about uncertainty with each other, that is, if they do at all. First, meet Heather, a hospitalist and educator.

Heather: Around 2015, 2016 maybe, my sister told me that she had started going to a high-risk breast cancer screening clinic and was like, "You need to go." I think my initial take and feeling about it was like, "Oh, that's just Darcy being a little over the top, anxious, and paranoid, but okay, fine. I'll go.

Emily: It was a long multidisciplinary meeting with a breast surgeon and a geneticist, both of whom she was meeting for the first time. At the end of the visit, she sat down with the surgeon.

Heather: I met with this breast surgeon. When I meet with doctors, it's like they know I'm a doctor. There's a little bit of a collegial aspect to the visit. I remember her saying to me very matter-of-factly, "Oh, you could do this. You could do tamoxifen. You could get a mastectomy." I was like, "What are you talking about? That was not on the menu at all in my mind," especially because I didn't even have breast cancer at that point.

Emily: According to this doctor, it boiled down to her family history.

Heather: They did genetic testing for all of known high-risk markers, including BRCA and a whole boatload of other genetic risk markers. It was all negative, but she basically was like, "Yes, it's negative, but you have something. We just don't know what that is yet, because your family tree is just like there's breast cancer everywhere." The truth is I didn't really think it seemed like that high risk of history. I think I was falsely confident as a physician that I would know, but they were very concerned.

[music]

Emily: They recommended a mastectomy, but emphasized that it was Heather's choice. To Heather, the risks just didn't feel clear-cut enough to justify such a big intervention from these physicians that she'd only just met.

Heather: I am foundationally an anxious person. I worry about a lot of things and a lot of things that other people don't worry about, but at that point, I didn't even want to take tamoxifen.

Emily: She opted for increased monitoring with regular mammograms and eventually biopsies.

Heather: It's painful to do the mammograms, and then they make you wait half-naked while they're talking to the radiologists in this cold room. Then they come back and they're like, "We're going to do more," and then they smash your boobs some more, and it hurts some more. I kept getting results of something called lobular carcinoma in situ, or LCIS. The thing about LCIS is that it's technically not pre-cancer. It's more like a marker of you're very likely to get breast cancer.

There's also a marker that with some types of breast cancer, it's regional. It's like, "Okay, if it's on the right, you're at risk for breast cancer on the right. With LCIS, it's like you're at risk for breast cancer everywhere." Doesn't matter what side the LCIS is on. It was becoming more real because it was like every time there would be something, maybe it wasn't slam-dunk cancer, but there was something that was not normal, and it kept growing. It wasn't a question of whether it would happen. It was a question of when I would decide to do it.

Emily: This whole time, the conversations Heather was having with her doctors focused exclusively on the medical risks and probabilities and not the growing emotional uncertainty that she was feeling as these LCIS findings piled up. Then in routine screening, the doctors found a tiny bit of lobular carcinoma, cancer. They took it out, but the case for a mastectomy was getting stronger. She was assigned to an oncologist, who just so happened to also be a colleague of hers.

Heather: I didn't really know her very well. I couldn't work directly with her a lot. Her rapport was not great, but I had one in-person visit with her. After that, all of our visits were by phone. Not necessarily by my asking for that, it's very possible she was just trying to be respectful of my time because she knew I was a busy physician as well. I remember one time when we had a scheduled phone call visit, I was at work. I went to my office where I thought it could be private.

Then, of course, she was late, which I get. I'm a doctor, but then I was in a patient room when she called me. I had to run out of the patient room. I was trying to find a private place. I ended up outside of our post-op area. There's this bridge that goes from one building to the other. It's not super busy, but it's not untraveled. I'm out there having this conversation with her. More of the like, "Have you thought about the mastectomy?" I was like, "Yes, I just don't want to have a mastectomy."

She just was like, "Well, why don't you want to have a mastectomy?" I was like, "What kind of question is that?" If she had said, "Yes, I can completely understand how it would be hard to make a decision to have a mastectomy. Can we talk a little bit about your thoughts and feelings about that, what you feel like the barriers are, what you're afraid of?" If she had elicited it in a more nuanced way about like, "What is underlying this?" No, I don't want to do that. It was all about the feelings.

Emily: Heather says that even at the time, she knew it wasn't logical to keep postponing the mastectomy, but she wasn't operating on a logical level. She needed someone who could help her navigate the swells of emotion the procedure was bringing up. Most of which, she was only able to name in hindsight.

Heather: I think that there was aesthetics of my body and what it felt like to be in my body. I think there was my experience of sex and sensory pleasure. I think another thing I didn't know going into the visit with a breast surgeon initially, she was like, "Well, we do mastectomy," and then she's like, "Well, some women get sensation back." I was like, "Whoa, wait a second. There's no sensation? I didn't know that." I think I was getting into the point where I was feeling a little bit like a ticking time bomb, but still having a lot of emotional pushback about making that commitment, because it's a very permanent thing. Once you've done it, it's done.

Emily: When Heather got off the phone, she felt alone and adrift in a sea of uncertainty. She requested to be switched to a different oncologist. She says that, from the beginning, it was like night and day.

Heather: I saw her in person. She was very thorough, very detail-oriented, had reviewed everything. First visit, basically said to me, "You're very high-risk. If I were you, I would have had this surgery three years ago." It was like, boom, "Whoa, okay, I will seriously think about this now." She was so direct, and she personalized it, said, "This is the kind of decision I would make for myself as well."

I think I had already been thinking like, "Okay, let's look at the options here. Either you do this or you wait, and wait till when?" My worst-case scenario ever was Stage 4 widely metastatic breast cancer. That would be a really stupid outcome because you decided to wait to do this thing. I think that I was in that headspace a little bit. Then she came in and was like, "You should have done this three years ago," and I was like, "All right then." That tipped me over the edge.

Emily: She couldn't have put words to it ahead of time, but it turns out that what Heather needed was a strong recommendation, a physician who didn't treat her like a fellow professional but a scared patient uncertain of the best path forward. A few months later, more than three years after the initial recommendation to get the mastectomy and three physicians later, Heather finally found herself in the pre-op waiting area with the breast surgeon who would perform the procedure. Again, meeting her in person for the very first time.

Heather: I don't know that it was relief. There was clarity. I still didn't want to do it. When I was in the pre-op area for the mastectomy, she's pre-opping me on a computer. She's like, "So you're ready to have this surgery?" I was like, "No." She just called up to me and then just went right back to her computer and kept writing like, "I'm just going to completely ignore that." I was like, "Yes," so I was never really ready.

Emily: Heather says she doesn't hold it against her. Obviously, she was there to have the procedure, so maybe it wasn't worth engaging with. In the days after, as Heather was recovering, she grappled with her choices on her own, "Had this surgery really been warranted?" Then a week later, she got a call from the breast surgeon. The pathology results had come back positive for micrometastases in the breast tissue that they'd removed. Now, Heather was cancer-free, but only because of the mastectomy.

[music]

Emily: It's been a little over two years since her last breast cancer diagnosis, and Heather says her outlook has shifted. She's made some changes to her job and more space for the things that she truly loves. One of the biggest changes, though, has been in how she talks to her own patients, especially when there's uncertainty involved.

Heather: When I make a recommendation to the patient and they're like, "I'm not doing that," I'm much less reactive when I think it is the thing that they should do. I'm much more likely to explore some more about what the barriers are. Honestly, in some cases, they just don't want to do it. I think there are some things that I used to do more cavalierly in terms of making recommendations. I work at the VA. We have so many veterans who come in with vascular disease and diabetes. They get a foot infection. They need to have a toe amputated or half their foot or half their leg. We recommend these things all the time, but that's a huge deal. I knew that cerebrally before. Now, I think I feel it a little bit more about like you're grieving the loss.

[music]

Emily: To learn more about different strategies physicians have in talking to patients who have to make difficult decisions, we called up April Sharp. She's a pediatric neurologist in

Baltimore, and she spent a lot of time thinking about how to help families deal with uncertainty.

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

[music]

April: What I encounter a lot is that families have just received the scariest news that they have ever heard in their life. Sometimes it's even what for us is a more routine diagnosis. New diagnosis of epilepsy is something that I've seen make almost as many parents cry as your child has a severe brain injury. They've just received some big news, something that's life-changing. Then we say, "Okay, we've got to figure out this medication with this range of side effects, and are going to present it to you in about 30 seconds. Is that okay?"

It is a shared decision-making model. I've shared all the information, and then they have the information, but we have years of experience with that medication and what it looks like to have a child on it. They just processed it in 30 or 60 seconds and might still be processing, "My child had a seizure." I think it's so important to have conversations again and again. Our care model doesn't always allow for that.

Emily: April thinks a lot about relationships. We actually first called her up because we were hoping to get our perspective on how she navigates the uncertainty in her field. Pediatric neurology is rife with ambiguity. How do you tell what a brain injury is going to mean for a child whose brain isn't even fully developed yet? In a lot of cases, April says you can't really, but her job is still to help families understand the range of possibilities and then move forward together. She says the uncertainty in how she communicates this information and how she tries to meet families where they're at is often just as complex as the medical uncertainty she's communicating about.

April: I use a lot of similar language, but the conversation is different every time because they're different people. They're bringing in different things. As they react, as they use words or language, I try to pick up on that and use it so that we are, in that moment, a team.

Emily: This isn't like a casual feel-good thing, April says. Being able to read the room and respond to families in a way that lands is critical to health outcomes, especially when the medical terrain is uncertain.

April: For a baby who was just born, their parents are meeting them for the first time. They look like a baby. Even a baby with brain injury looks like a baby. It's so important for us to meet them where they are because we're talking about therapies. We're talking about medications, lots of interventions. I need them to buy in. I need them to be willing to come back to the appointments. So much of it is subtle body language, whether or not the parents are making eye contact. Is one parent looking at me, and the other parent staring at the wall?

Emily: This type of uncertainty, the dance of human relationship, is not something April learned in medical school.

April: I developed these skills long before I ever wanted to go into medicine.

[music]

April: I come from a poor Southern family. No one in my family ever graduated from high school, so certainly didn't go to college, didn't go to medical school. I started very early on just observing people and trying to understand them and figure them out. My family's not very good about displaying emotions, but trying to understand, "Okay, this happened, and these are the reactions, and this is why."

I guess the other part of that is I went in and went to a college that most people were for very different backgrounds than I was. Everyone at 17, 18 is mostly trying to assimilate and had to very quickly understand people who grew up very differently from me. Talking like they talk, moving like they do when needed. Medicine came later, but I have that approach with families.

Emily: April says that over the years, she's found that the discomfort that comes from not knowing, whether it's medical uncertainty or what's happening relationally with a family, that that discomfort has actually proven to be one of her most valuable guides.

April: There are many things that make us uncomfortable. Those are often the things that I pay most attention to. I'm thinking of another patient that I'm taking care of right now, today, who's had a sudden decline. I've known him for months, or he's only four months old. Last week, he came to clinic, and he did not look good. I said, "You're going to the hospital." Now, we're doing potential end-of-life care. Things have changed so quickly.

The family, they don't have all the information about why he is the way he is. Every time I walk in the room, they're in a different place. I show up and I support them. We have a big conversation every time I walk in. There are some aspects of it that I've anticipated and been ready for, and others that I had to say, "If you want to have that conversation right now, we will have that conversation right now."

I guess one other thing that I would add as I was thinking about this topic and with the cases that I'm currently trying to figure out is where we create certainty from uncertainty. For example, this patient, he probably has a genetic syndrome. I don't know what it is. All of our tests aren't back. What I do know is that, right now, his body is shutting down. I don't know why. That's really frustrating to not know why, because then we don't know if it's reversible. What I do know is that he can't breathe, and he's relying on machines.

That is the thing that I'm trying to help the family anchor on to make all the difficult decisions that they need to do. That part is certain. I think often in these really hard prognostic conversations, I find something that is more tangible to help families anchor on and say, "This is certain. Many things are not, but this is." This is how we move forward with that information because, otherwise, it would be so hard to do what we do if everything felt like it was layers of uncertainty that it is.

[music]

Emily: This brings us to Part 2 of this episode. How do clinicians communicate about uncertainty to each other? We talked to a lot of clinicians for this series. While all of them affirmed that uncertainty is a constant in their daily work, many of them also expressed discomfort around naming it explicitly. Would it make their patients or colleagues trust them less? Would it convey a lack of expertise or confidence? Would it be looked down upon?

Lekshmi Santhosh is one of the people out there working to change this. She's a pulmonary critical care doctor at UCSF. I actually know her from when she was my chief resident and I was an intern. There are few people out there as earnest and committed to changing the culture of clinician communication as Lekshmi, so we knew we had to talk to her. A few years ago, Lekshmi developed a tool called the ICU-PAUSE, basically a tool for making uncertainty more visible in communication between clinicians. We caught up with Lekshmi to learn more about the ICU-PAUSE and about her work to help clinicians talk more openly about their uncertainty with one another.

Lekshmi Santhosh: When I first became interested in these topics, it was a very specific case, actually, that I recall.

[music]

Lekshmi: I was a senior resident on an intensive care rotation. There was a patient, a little altered, a little confused, a little encephalopathic, who came in for what we called "airway watch."

Emily: Basically, they were just going to keep an eye on him and make sure that he was able to protect his airway. In the meantime, they were also going to try and figure out what was going on.

Lekshmi: We did a CT scan of his head. It was negative for anything big. There wasn't anything "focal" that prompted more detailed imaging like an MRI. There was nothing really going for infection. He "wasn't that sick" overall. Still, we didn't have a great explanation for this. Of course, critical care is a limited resource. When it was deemed that he was protecting his airway, fine. He didn't need suctioning. He didn't need to be intubated. He was doing okay. We transferred him back to the regular ward team where he came from.

Emily: Just two days later, though, the patient was readmitted. As soon as Lekshmi heard he was back, she knew something was wrong.

Lekshmi: It was just this recognition and feeling of, "Oh, my goodness. He was just here. What happened?" Then that wave of, "What did we miss? What did I do? What could I have done differently?" Just this sinking stomach of, "Oh no."

Emily: The patient had continued to deteriorate. Eventually, the team on the regular ward figured out that he had an epidural abscess, an abscess that everyone, until now, had missed. "This isn't entirely uncommon," Lekshmi says. An epidural abscess, an infected fluid collection near the spinal cord, overlaps with symptoms of many more common conditions. A standard head CT, the usual first step for altered mental status, will miss it. It's invisible unless you specifically go looking for it. Lekshmi said that this patient looked like he had aged years in just the two days since they'd last seen him. He was intubated. He couldn't talk, and he was very frail.

Lekshmi: What struck me in that moment was not that, "Oh, gosh, we missed this," but was that we didn't really convey to our team when we sent this patient back that, "Hey, he came to us confused." Even though he's "better" from an intensive care perspective, we still don't really know what's going on. This is a case that stuck with me. Then when I became a fellow, having to choose a fellowship research project, I said, "I really want to focus on this concept of uncertainty." How do we explicitly communicate that at these transitions of care, which are high-risk times?

Emily: It's really worth underlining Lekshmi's response to this case. It wasn't to double down on studying the manifestations of epidural abscesses or to try and prevent future uncertainty. Instead, it was to notice that the uncertainty they felt hadn't been adequately documented. Basically, their hand-off had been incomplete.

Lekshmi: Communication is one of the most common causes of medical error.

Emily: There's a lot of reasons for this, but in the ICU, Lekshmi says one of the main contributing factors is the environment itself. It's a constant deluge of information.

Lekshmi: There's alarms of all different volumes that are piercing to the ears, that are all going on at the same time. Your pager is going off. The phone's going off. Meanwhile, you have a crashing patient that has an urgent airway emergency that needs an urgent intubation, that's getting a massive transfusion protocol, that's getting 20 units of blood. You're having life-and-death conversations every day with multiple families. You have to be on top of all little details and keep the big picture in mind. As a learner, it's overwhelming. As an attendant, it's overwhelming.

Emily: In an environment like this, it's easy for details to get missed. When it comes to cases with a high degree of uncertainty, this can be doubly true.

Lekshmi: It's like a detective solving a puzzle, in that you don't know if this clue is going to be important later on. The red hat or the fluid around the heart. Sometimes we'll say, "Just FYI, there is a pericardial effusion, fluid around the heart, but it looks old. It's probably been there for a while. It is probably unrelated to everything. Just in case, if they lose their blood pressure, just remember that there is fluid around the heart." [laughs] The person listening is like, "Okay."

Emily: At direct odds with tracking information like this is the very real pressure in ICU medicine to keep patients moving.

Lekshmi: You make literally tens of thousands of decisions every day in an ICU. Cognitively, you can imagine that when you get a "easier admission," it's almost like-- I don't want to say it's the kiss of death, but it's almost like when someone doesn't have critical care needs anymore or doesn't have inpatient needs anymore. People's brains go to discharge mode, and it's hard to go back to the Y-mode.

Emily: It's not just the cognitive load that creates this momentum toward discharge. It's also the fact that ICU medicine is a limited resource.

Lekshmi: There's always that pressure of sick people who need those beds from the emergency room, from the operating room, from the medical floor, from other hospitals. I don't want to say there's scarcity mindset because there's actual scarcity. It's just scarce.

Emily: With all these pressures, ICU medicine has to be a team sport, Lekshmi says. There's no other way.

Lekshmi: That is one of the things I love about being in the ICU is this idea of team cognition, that we know that it's just so much information for one person. We're actually relying on all the sets of eyes and creating that culture, too, where I want the nurse to tell me, "Oh, isn't it weird that they did this, or does this look odd to you? Is this normal in this condition?"

I want to create a climate where, really, I say it repeatedly, there's no dumb questions. There's no questions too small to bother me with, because that might be the clue. You noticing something or you asking me, "Is this normal?" This condition might jog something and somebody on the team's thinking to say, "Oh, actually, that's weird. Let's think about that differently. Let's reframe where we're at. This does not make sense."

Emily: Which brings us back to the case of the epidural abscess. Lekshmi says that one of the greatest threats in ICU medicine is premature closure, because once someone is discharged, unless any remaining uncertainty in their case is explicitly documented, the implicit assumption is that everything's good. So often, as was the case with the epidural abscess, the remaining uncertainty is just as vital a piece of information as the aspects of the case that are certain.

For her fellowship research project, Lekshmi joined forces with a couple of other doctors in Oregon and Illinois. Together, they began looking into how uncertainty was being communicated at ICUs across the country. What they found was that, at best, transfer notes were like a mini-discharge summary, but they rarely, if ever, mentioned uncertainty. In many cases, there were no transfer notes at all. They developed a framework, what they call the ICU-PAUSE, basically, a structured template for hand-off notes that includes, at its heart, an uncertainty measure.

Lekshmi: You just say explicitly, "Our working diagnosis at the time of transfer is this, though we thought about this, this, and this," and then you just select high certainty, some certainty, or marked uncertainty.

Emily: It may seem simple, but the ICU-PAUSE is already making a big impact. It's active at 21 sites with 20 more preparing to implement it. Lekshmi says it's already leading to fewer missed details.

Lekshmi: I think more interestingly and, again, hard to measure is just that cultural piece of, it's okay, even in a profession like ICU, where we really talk about putting our nickel down, to use the words "uncertainty" and "working diagnosis." Giving people the language to express that is really helpful in normalizing discussions of uncertainty and not allowing it to paralyze people, but actually enabling us to have better patient care.

[music]

Emily: Thanks for listening to The Nocturnists: Uncertainty in Medicine. Our core uncertainty team includes me, Emily Silverman, The Nocturnists head of story development Molly Rose-Williams, producer and editor Sam Osborn, and our uncertainty correspondent, Alexa Miller of ArtsPractica. Our student producers are Clare Nimura and Selin 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 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 Nocturnists: 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 Nocturnists 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 Nocturnists 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'll become an essential part of our creative community. If you enjoy the show, consider signing up today at thenocturnists.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.