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

This is The Nocturnists: Uncertainty in Medicine. I'm Emily Silverman. This is the final episode of our series on uncertainty, and as we wrap up, we're turning our focus to a different kind of uncertainty. The kind that doesn't come from a tough diagnosis or a difficult conversation in the exam room, but instead comes from something bigger, the healthcare system itself. Specifically, we're looking at one of the most destabilizing and opaque forces in American medicine. Health insurance. It shapes everything. From how clinicians interact with patients in the exam room, to whether a treatment is

Here, the uncertainty isn't about the diagnosis or the treatment itself. It's about whether the insurance will cover it and whether that coverage will come in time. Today, we bring you a story about a family caught in that kind of uncertainty and how they refused to accept it. Later in the episode, I'll sit down with Alexa Miller, our uncertainty correspondent, to reflect on what we've learned over the course of putting together the series. Finally, we'll close the series with one final voice, a voice that speaks about accepting uncertainty rather than fighting it, but first, meet Ed.

Ed Stratton

Oh yes. My name is Ed Stratton. I live in Ballwin, Missouri. It started back in March of 2019 when, out of the blue, it just started passing blood, and then from there, I got admitted in the hospital where they diagnosed me with stage four colon cancer.

Emily Silverman 

This is Ed Stratton. He's a sales rep for a medical device company. He loves golf, and he lives in a suburb outside of St Louis. He was a little over 60 at the time of his diagnosis.

Ed Stratton

If you get treated right away from colon cancer, the success rate is somewhere close to 90% to 95% if it's just stage one, but when it gets to stage four, then the assess rate goes down dramatically, or somewhere around 13%.

Emily Silverman 

Despite those odds, Ed beat the cancer. It took him four years, and he underwent a colectomy, four rounds of chemo, a hepatectomy, after the cancer spread to his liver, and then by 2024, he had no detectable cancer. The problem was, as these things often go, that wasn't the end of his medical journey. The surgery and radiation therapy had damaged his liver. Even though he had beaten the cancer, at least for the time being, now his liver was failing.

Erin Stratton 

It was a response to the treatment that he received in a good way. It worked, but there was just so much damage from treatment.

Emily Silverman 

This is Ed's daughter, Erin. In 2024, she had just moved back to St Louis from Nashville to be closer to her dad. By then, Ed was in and out of the hospital with recurring infections. His doctors told him the infections wouldn't stop. They were a sign that his liver was failing. Eventually, one of the infections would be fatal, so the only path forward was a liver transplant. Before he could get the transplant, he needed approval.

Ed Stratton 

I think there were 11 or 12 doctors that had unanimously approved this liver transplant. It was quite a procedure. It was a two-day experience where I went down and they did all the tests. An MRI and a PET scan, and all kinds of extra things from me. That procedure, just to get on the thing, probably was a two or three-month timeline on that.

Erin Stratton 

It was a group of, I think, 10 or 12 physicians, and they had to unanimously decide that he was a candidate and that his case was deserving to be on the list. We really thought that was going to be the biggest hurdle for the whole thing. It was really exciting once we got past that.

Ed Stratton 

The only thing they said to me was, "You're on the list. The only thing we have to do is get approval through the insurance," which we thought was not going to be a problem, because my insurance up to that point had approved every single thing.

[music]

Emily Silverman 

This was Anthem, who had otherwise stuck with him through his years of cancer treatment, $700,000 worth of cancer treatment that had already been covered. Now that Ed had received approval for the transplant from the liver transplant team, his hospital's transplant selection committee, and from OPTN, the Organ Procurement and Transplantation Network, which is the federally designated system for organ sharing, he assumed Anthem would follow suit, but it didn't. Anthem denied his transplant. Ed and his family assumed that there had been some kind of mistake.

By law, patients are afforded two appeals and an independent medical review for all denials. It's part of the Affordable Care Act, so Ed filed his first appeal.

Erin Stratton 

I had moved here now, and it was my mom's birthday. My cousin and I had planned this big birthday weekend. We had a big staycation, and we were about to head downtown, and they received the first denial letter at 4:00 PM that Friday. It just came in the mail. There was no phone call from Anthem. There was no communication outside of just the letter that said, "We're upholding our denial." It said, "We have consulted with medical director at the health plan. Our system shows that you have colon cancer, and studies have shown that a transplant will not further your short or long-term health."

Got that news and didn't have any way at that point, there's nobody you can talk to. You can't call anybody at 4:00 or 5:00 PM on a Friday. We just left everything hanging.

Ed Stratton 

This is like a life-or-death situation. The doctor said I needed the liver transplant to survive, and the insurance was denying it. We had a table set up here in our dining room, and it looked like a war zone. All the medicine, all the antibiotics, all the stuff that's needed, basically, going back on antibiotics was the only thing that was left. Every time I had an infection, it was a different infection. He told me that at a certain point, the antibiotics were not going to work, that your body cannot fight them off all the time.

There was no other option. The liver transplant, it was either that or I was probably going to die. That whole weekend, I was just really thinking of what do we need to do next.

Emily Silverman 

The denial hadn't been some mistake on Anthem's part. An internal physician at Anthem had looked over Ed's case and decided, against the advice of over a dozen other physicians who had personally seen to Ed's care over the last four years, that he didn't need a new liver. At this point, Ed's care team at the hospital were leading the efforts to submit further appeals, and his doctor, Dr Chapman, reached out directly to Anthem for a peer-to-peer with their medical director.

Erin Stratton 

Once we got our first denial letter, they said, "Oh yes, we've seen this in a couple other cases. We're really optimistic that we can get it overturned."

Emily Silverman 

That was not what happened. Ed received a second denial letter. It said, "Your doctor recently asked us to take another look at your request, and then, after that, in bold, we still can't approve your request," so they had to assume that the peer-to-peer hadn't worked. Then the hospital submitted two escalating, expedited appeals and an independent review of Ed's case. This is the legal limit to the number of appeals patients are allowed under the Affordable Care Act.

Erin Stratton 

After that, things happened pretty quickly. I think the next week, we got the remaining three denial letters within two or three days. It was like we just got letter after letter, and the first three said the exact same thing, verbatim, to the point that they copied and pasted the rationale. I was like, "I can't even get a letter in the mail this quickly. I don't know how you're having all these other appeals and postmarking it from California and sending it to us in a day's time, 12 hours."

Emily Silverman 

We looked at all these letters ourselves, and Erin was right. The same rationale is copy pasted across all three denials. The text of the rationales actually gets lighter with each denial, the same way that text on previous emails sometimes gets lighter and lighter on subsequent email chains. Coincidentally, Erin's job was all about navigating communications from health insurers, specifically crafting communication strategies between insurers and providers, helping patients understand their coverage, and figuring out what negotiating with an insurance company actually looks like in practice.

Erin Stratton 

I've worked in healthcare communications for almost a decade, and was still really shocked and struggled to work through the system when we were going through it personally as a family. I remember telling my then CEO, I was like, "We talk about this stuff every day, and I still have no idea how to approach it. I don't know what to say, I don't know what to expect, I don't know who to talk to." It was a real flip from "Here's the impact to the economy," to "Here's the impact to a person."

Emily Silverman 

Meanwhile, all of this was starting to take a toll on Ed.

Ed Stratton 

It was tough. As I said, the first four and a half years, I was able to deal with it, but this last year, going back to about a year ago, to now, it was really a tough year, because I was in and out of the hospital with so many different infections. It's one thing the appeal not to go through, but then you're dealing with the illness as well, so it was a tough time for me.

Emily Silverman 

They were at a dead end. They had submitted all the appeals that they were legally entitled to, and those had been denied. Erin says that they started considering alternative options, the first of which was going out of pocket for the transplant, but the back-of-the-napkin math on that tallied up to a million dollars, and where were they going to get that money?

Erin Stratton 

Listen, I was whole hog. I was going to order pig livers and send them to Gail Boudreaux. I was ready to go.

Emily Silverman 

Gail Boudreaux, being the president and CEO of Anthem, who, before that, was president and CEO of UnitedHealthcare.

Erin Stratton 

I did not do that. By the way, don't do that. To give you a sense of the emotional state of where people were, we were ready to go to battle.

Emily Silverman 

By luck, Erin had been connected with a health insurance whistleblower named Wendell Potter from her previous job in the industry. Potter is famous in healthcare advocacy circles for essentially switching sides briefly. There was a similar case to Eds in 2007, where Nataline Sarkisyan, a 17-year-old leukemia patient, needed a liver. Cigna, where Potter worked at the time, denied it, calling the treatment experimental. The family fought and fought and fought, and after many weeks, Cigna finally agreed to cover the transplant, but just hours after they overturned the decision, Nataline died.

After that, Wendell Potter left Cigna to go into healthcare advocacy.

Erin Stratton 

I know Wendell through my old job. We used to work with him on a lot of media, a lot of background research, things like that, and I just reached out to him. He said, "Oddly enough, I'm working with a guy who is in the claim space, and is working on automating claims and how we really approach the denials.

[music]

Emily Silverman 

This is how the Stratton family first encountered Warris Bokhari and his startup, Claimable.

Warris Bokhari

My name is Warris Bokhari. I am a medical doctor. I haven't been practicing for maybe the last 10 years or so. I grew up in England. I was actually raised by two disabled parents. My mother, for as long as I can remember, struggled with rheumatoid arthritis, and it was a very different condition in the '80s and '90s. There weren't the modern medicines around now, so a lot of it was just pain control, lots of steroids, and she didn't work. Then, from about the age of four, my dad retired through disability, and he had a number of problems with his back, and became a long-term patient who ended up having lots and lots of medical issues through his life.

Emily Silverman 

This experience is what caused him to go to med school and become a doctor, working as a physician in England, before finding his way to the US. It was here that the differences in the healthcare system became very apparent.

Warris Bokhari

The core difference that I've observed is, given the challenges my family had, we never went bankrupt, and that's by no means a guarantee for anyone in America who has similar issues of living with chronic disease, managing disability.

Emily Silverman

Warris stopped practicing and entered the corporate world. He felt like helping patients one by one as a physician wasn't ultimately sustainable for him, at least. He once told me that it felt like pulling a starfish out of the ocean, fixing it, and throwing it back in one by one by one. That there was a beauty to it, but that it also felt futile. He felt as though he was getting lucky with each patient he helped, but that eventually that luck would run out, so he went to work for Kary Mullis, who won a Nobel Prize for inventing the PCR test, and then bounced around to GE, Apple, and finally, Anthem.

Warris Bokhari

There were a lot of physician friends of mine who were saying, "You sold out. You went to the dark side." I didn't really understand it, because I didn't practice medicine in the US, but I really wanted to understand how the decisions are made on the payment side towards patient benefit. I went into the digital team, who were meant to be modernizing Anthem from the inside out and taking them in a new direction of creating either experiences which are very beneficial to patients or providers, and really trying to streamline what's happening. I got to work on some great programs.

I got to work with some really, really smart people, hire a great team. The problem I think I had working at Anthem, ultimately, was that it was kind of like this realization I had, was that health insurance is really a financial products company looking to sell more products at the lowest possible marginal cost. I'm really looking at how do I get patients the most appropriate care. That is not something which really takes flight inside of an insurer in any systematic way?

Emily Silverman

He left Anthem and started asking himself what he really wanted to accomplish in healthcare. What was it that he originally set out to do?

Warris Bokhari

This issue of patients in this country who are stuck with bad insurance decisions, which lead to all sorts of economic problems, all sorts of healthcare problems for them, and it's really real. That had to be the thing I solved.

Emily Silverman

The Commonwealth Fund estimates that 17% of adults will be refused coverage for a treatment prescribed by a doctor. 47% of those patients report their condition worsening because of that denial. This kind of uncertainty can have a huge impact on someone's quality of life.

Warris Bokhari

There's a lot of feeling ashamed that people need to ask for help. I think I saw that a lot. I saw a lot of people who were proud. They were proud of their ability to solve problems for themselves, to work to provide for their families. Then that's been taken away through illness, and that's been taken away through not being able to have treatment that keeps them able to work. That was really common. Then I met a patient. He's a really kind man. He lives in Illinois, but he comes to Missouri to get treatment, and he somehow got enrolled into two insurance plans in one year.

His wife worked for an insurer, and I guess the wrong button got clicked during open enrollment, and he ended up with two insurance plans. Then, all of a sudden, no one was paying claims. His primary care doctor refused to see him. He had something that felt like a heart attack. Then the bills started to come. He told me, "In my family, I'm the person that people come to, to fix things. They come to me, and now I'm having to go to my children." He felt so ashamed.

You hear from patients who could walk barely a few steps, but yet they were dealing with these insurance denials, and they were spending hours on the phone talking to faceless people who have no idea who they are, who are making decisions about their life. I also hear often that doctors and provider practices are not able to fight for patients, and so then that makes me wonder, where does that leave these people, then? What does that mean for their economics? What does that mean for their livelihood?

Emily Silverman

The uncertainty that stemmed from the health insurance system came to dominate many of these patients' lives. Will they be able to receive the correct treatment? If so, will that treatment end up bankrupting them? This was the set of problems that Warris wanted to tackle, and he wanted to do it with AI

[music]

Emily Silverman

His company, Claimable, works by submitting AI-generated appeals on behalf of patients. Their website explains that only 1% of patients even pursue an appeal to their denial of coverage. The way Claimable works is largely automated for most customers. You upload your documents, answer a series of questions, and then their AI software generates an appeals letter that, by their claims, successfully overturns denials 80% of the time. It costs $40

Warris Bokhari

There's an Upton Sinclair quote that I really love, and you'll know when I say it, but it's impossible for a man to understand something if his salary depends on not understanding it. We've created an entire system of people whose salary depends on not understanding the patient experience. As a result, the business of healthcare is very separate to the human experience of needing care to be delivered. That is where we've arrived. Yet, there are legions of people, I see them on LinkedIn, I see them at conferences, who will defend to the death the payment model that we have created. They will invest money in defending the payment model.

A payment model doesn't serve providers. It burns them out, and it doesn't serve patients who are struggling for access. I was reading the Commonwealth Foundation's report on US healthcare, and we're dead last. We're dead last for access. We do come first, though, for cost, and so when you start thinking about stripping out the vanity metrics, we're not doing a great job. We need to realign this back towards something which is genuinely making people healthy.

Emily Silverman

His hope is that by offering patients an easy, affordable way to file an appeal, that denials of coverage will less frequently block care. It did make me wonder, though, if AI-generated appeals become normalized, won't AI-generated responses to those appeals also become normalized? Is this just the next step in an AI arms race that further cuts out the human patient?

Warris Bokhari

The reality is that patients are being served AI-generated denials today on mass. There are a lot of insurance companies like Cigna who are being sued for these alleged practices in the state of California, for just effectively machine gunning out AI denials faster than would be possible by a human reasonably evaluating a claim.

Emily Silverman

He's referencing the court case, Kisting-Leung et al. v. Cigna Corp, where Cigna was accused of automating claim denials without proper medical review. The lawsuit contends that 300,000 claims were denied in this way over two months, with each review lasting approximately 1.2 seconds. The case is currently ongoing.

Warris Bokhari

Now, the patient appeal channel, the appeals actually have to be read by a human. They have to be read by an appropriately qualified human. If you're a patient and your care has been denied, the best way to guarantee that your care is reviewed by someone with a pulse is probably by filing an appeal. That's the premise. Now, could they implement AI to summarize these letters and other things? Sure, over time.

These companies are often so antiquated on the inside that that's actually quite a big lift.

Emily Silverman

For now, Claimable focuses on a few different types of treatment that are frequently denied.

Warris Bokhari

We focused on rheumatoid arthritis. Part of that being personal to me, because my mum had it, and the other part of it being just because there's a lot of denials in RA.

Emily Silverman

They now also work on denials for Crohn's, ulcerative colitis, and migraines.

Warris Bokhari

Look at the number of migraine patients in the US, and it's like 40 million people have migraines. The insurers are refusing to acknowledge modern standard of care, and they put these patients through all of these loops we built for migraine, also.

Emily Silverman

That's the standard model for Claimable. It's fully automated by AI, but in rare cases, very rare, Warris and his team can't help but get involved, which is where he found himself with Ed Stratton's case.

[music]

Warris Bokhari

Wendell put me on an email with Erin, and my first response was, "Oh, God. I don't know if I want to take this on," because it was, it was such a grave case, and I was sitting with the-- they run this practice in Missouri, and I read it out loud, and they're like, "Oh, her dad is getting treatment at Washington University. He's here in Missouri. You should call her." I did. It was 9:00 PM at night. I called her out of the blue, I talked to her, and she explained the situation to me, which was this crazy situation. The idea that her dad-- first of all, the process of getting diagnosed with cancer is awful.

Your entire plan for your life changes, and then to go through numerous receptions, that's a long journey. Then to be put on the transplant list, that's a journey. Then to be told that you can't have it and that your best option is probably death, and that's really what it comes down to, because generally, failing livers don't heal themselves. Where does that leave you?

Emily Silverman

He recognized the agony of the uncertainty that Ed was trapped in. After everything he'd been through, everything he'd survived, to be stopped by paperwork and bureaucracy, that hit close to home.

Warris Bokhari

I asked Erin to come into the clinic the next day because we were seeing patients in a clinic in Missouri, and she came in and she brought a lot of notes about her dad, and I'm like, "Okay, we're going to work on this."

[music]

Warris Bokhari

Together, we worked on building out a timeline of what happened to her dad and corralling the clinical evidence about why a transplant would benefit someone like her dad. She was digging into the files for her dad's review, and she found, oh, my God, they're using policy that's really old. The policy they're using actually comes back from 2002, or at least some of the evidence does. 2002, incidentally, was the year I started medical school, and there's a lot of medicine that's come and gone between now and then. The space moves pretty quick. This was really interesting.

Emily Silverman

What Warris is referencing here is the independent medical review, the final appeal allowed under the Affordable Care Act. It brings in a physician from a federally approved agency to review the case. The patient never meets this doctor, but their ruling determines whether the care moves forward. In Ed's case, that ruling was based on medical evidence that was 20 years out of date, evidence that said he didn't need a transplant.

Warris Bokhari

Then the question is, how good are the people who they hire? What we found is they're often not very good. They often don't have recent experience. They often may not truly be a peer of a person who's deciding your care.

Emily Silverman

They looked up the NPI, or the National Provider Identifier of the family medicine doctor that the insurer had hired to perform this review, and what they found was that the last time this doctor had worked in transplant medicine was in 1982, 40 years earlier. It was this doctor, not the panel of physicians from Ed's hospital, that originally reviewed his case and deemed him in need of a new liver, but this doctor, who had never met Ed, who ultimately had the final say on whether or not Ed's transplant was necessary.

Warris Bokhari

What we did was we made the comparison, and we said, "Look, insurance company has no such expert." Then we went through the qualifications of her dad's surgeon. Then we went through the qualifications of the person who was named in the appeal letter, and we just contrasted them. It was like, number of peer-reviewed publications, zero. Number of peer-reviewed publications, 380. Number of clinical trials, zero. Number of clinical trials, and so it went, and just highlighted that this person had no relevant experience, and absolutely was not a peer, and so the review had been done completely inappropriately.

It feels so unfair because there is someone who could make a rational decision about your care, and that person is completely anonymous to you. You have no idea who they are. They often don't have a name. The letter is often signed, the utilization review team at UnitedHealthcare. You don't know who this person is, and they've made a judgment about you. Those judgments can be profound. In Ed's case, that's really profound to be denied the chance of having a new liver. By the way, I think the survival without was like 10% at 5 years, and with is 85% at 5 years. That is a significant change in your odds.

Emily Silverman

Warris and Erin started compiling all the research they possibly could to dispute the rejection of the appeal.

Ed Stratton

I don't know how many hours they spent. I think close to over 400 hours they spent on this in order to do this public appeal. She was telling us, "This is what you need to do. You need to do this, this, and this." She organized the whole thing.

Erin Stratton

I felt a real sense of pressure because this is my job. [laughs] If I can't do it here, what does that mean? There was a lot of pressure just to get it right. Think about every single piece of information that might be helpful that I've ever learned in my career time. I was throwing Hail Marys all over the place. I was texting clients questions. I was texting board members questions. Just, how do we find that silver-- I felt a lot of pressure, I think, on that front to find the silver bullet that would make them say "Yes."

Emily Silverman

They ended up with a 62-page document. Not only is it thorough, it is scathing. There are all-caps bolded headers to sections like "Your decision is illogical, expensive, and will cause me material harm." They even found that the independent physician hired to review Ed's case wasn't authorized to do so in the state of Missouri.

Warris Bokhari

We put a lot of pressure on them. It was sent to the Attorney General of Missouri. It was sent to the governor. It was sent to people in CMS, it was sent to people in HHS. There was a long list of recipients. One thing that we do at Claimable in the methodology is make sure that the insurance companies know who else is getting a copy of the letter because this actually puts pressure on them to say, "Okay, you're doing something wrong. Let's make sure that as many people who are decision makers can know about this."

Emily Silverman

The problem was that Anthem had actually already fulfilled its legal obligation to hear Ed's argument. They had rejected his two appeals and an independent medical review, so there was actually no guarantee that they would even respond.

Erin Stratton

We got one outside response once we submitted the appeal. That was like, "We've received it." It was something like, "You have no expectation of urgency because your appeal is denied. You have no options left, so we can't mark it as urgent anymore." It was kind of anticlimactic. I thought we'd hear back right away, and they would be so offended by everything that we put in this appeal that they would want to respond right away. We didn't hear anything. We submitted it on a Friday. They confirmed they received it on Tuesday, I think, Monday or Tuesday.

Emily Silverman

Anthem sent a confirmation letter that the document had been received. Again, it noted that they had no obligation to hear Ed out, but at the bottom of the letter, it also said that they were opening a health plan review, which was something that Erin had never heard of. The rest of the week passed in silence, and then early the next week.

Warris Bokhari

Then on Monday, I got a call from the Anthem nurse saying that it had been overturned, which was quite a day.

[music]

Ed Stratton

Unfortunately, we were going to celebrate that night, but then I got a fever, and I ended up in the hospital, so it wasn't a very good celebration.

Emily Silverman

Ed was still obviously very sick, but even in the hospital, he was able to celebrate with his family and thank Erin.

Ed Stratton

She organized the whole thing, and she did a fantastic job. I believe that the reason I got the liver transplant was because of her and Warris and the way they appealed this.

Emily Silverman

Not long after, Ed got his new liver.

Ed Stratton

That was quite a procedure. I remember going under, and then the next thing you know, you wake up. I didn't realize it was a two-day process. They wake you up and they tell you, you have a new liver. It was amazing. My energy came back, my appetite came back, and everybody says my color came back. I think I was awful white for quite a while.

Emily Silverman

A letter from Anthem did eventually follow up after their phone call approving the liver transplant.

Erin Stratton

They did send a letter when the denial was overturned, and it's my favorite thing to talk about verbatim. It says, "This is good for one liver until December 31," which was my favorite line.

[music]

Emily Silverman

This is our final episode, and throughout the series, we've heard a lot of powerful stories about Uncertainty in Medicine, how it shows up, how people live with it, and sometimes how people fight back. To close things out, we wanted to return to someone who's been with us since the beginning. Alexa Miller, our uncertainty correspondent. You may remember Alexa's story from episode one. The story of how her sister's undiagnosed condition shaped Alexa's understanding of uncertainty early on.

This taught Alexa that leaning into uncertainty is key to arriving at an accurate diagnosis, but it also taught her that a lot of the uncertainty we deal with, like the uncertainty in Ed's story, actually stems from the system itself. Alexa, can you talk a bit about the uncertainty that arises from the system?

Alexa Miller

I guess in discussions of different kinds of uncertainty, I always return back to Paul Han's model, which I love, because it starts with inviting you to think about where the uncertainty comes from, where's its source. That model presents these really helpful different zones of clinical practice where uncertainty arises in probability and ambiguity, and complexity. What that model doesn't account for are some of the manufactured aspects, some of the things that are more a function of the world in which we live and work.

Forces outside of medicine, but with which medicine is totally interdependent, can add to the uncertainty that a patient is feeling and completely magnify the agony that they're in unnecessarily.

Emily Silverman

Yes, and when we started the series, one of our hopes was to offer listeners a kind of toolbox, something that they could use to navigate uncertainty with a bit more clarity. Alexa, how do we build those skills?

Alexa Miller

There's this concept in medical ethics called the naturalistic fallacy, which is the assumption that things are the way they are because that's how they are. A lot of things are the way they are not because of patient-centric or care-centric reasons, but because of other influences, like industry. It's really important to recognize that and for everybody, especially nurses, doctors, people in closest contact with the needs of the patients, to be able to say, "Something's weird, something's off."

It takes a really brave, courageous medical student, and it doesn't always happen right away, who's going to just go, "Hang on a minute. Something's weird, something's not right. I feel totally unsettled by this." They don't say that right away. Not because they don't feel that, or they don't see that. It's because it's not the culture. When you look at cases of error again and again and again and again, and cases of medical harm, people knew something was not right, something felt off, and instead, everybody acted to its confirmation bias, like back up what the attending said it was even when something felt off.

It's very important to just know to recognize when things are off, and be able to recognize that and say that

Emily Silverman 

I love that. Just noticing that something feels off and choosing to stay with that feeling instead of brushing it aside can be a really important place to start. Alexa, I know in your teaching, you often leave students with three wishes as they move forward in clinical practice, so I was wondering if you'd be willing to share those with us.

Alexa Miller 

Sure. My three wishes for students who complete the uncertainty course are, first, that they just accept uncertainty. It doesn't mean it's easy. It doesn't mean it's

comfortable. In fact, quite the opposite. What comes with acceptance of the discomfort of it is knowing that that's the beginning of learning, that that discomfort drives learning and the right kind of knowledge acquisitions, and to really expect it. If you're not expecting uncertainty, it's always going to come as a surprise and as a distressing experience.

Part of that acceptance is this basic competence of knowing different types of it and being able to recognize that, and being able to recognize where it's coming from, as well as how it applies in patients' lives and whose mind and body and family it's living in. The second wish is to talk about uncertainty and talk about it well. Just as you are going through it yourself, you know what, every single one of your peers here in medical school and also out in the field and in the hospital and in the clinics, every single one of us is going through it too. We cannot shift from just being aware of something into taking action until we know our peers are doing it too.

That brings us to the third wish, which is to advocate in uncertainty. Staying with patients, not just like, "I don't know, I'm referring you to somebody else, and I'm done here," but following up, sticking with them, working to accurately represent their needs, their situation, their picture, and their goals. Trust happens as a result of that happening really, really well. When you know that you have done everything you possibly could to advocate in uncertainty, that's when, even if things didn't go well, you can get the peace of knowing you did your very best.

No three Wishes would be complete without a command, [laughs] and so I also would like to plant a command. Maybe my wish for listeners, don't just tolerate uncertainty, but step up in it. Be a role model for embracing it, for learning on the fly and learning collaboratively in it, normalizing a conversation about, really, what everyone is going through.

[music]

Emily Silverman

Before we go, we want to leave you with one final voice, the voice of a person living with a rare neurological condition that's slowly taking her senses. This isn't a story about resolution or clarity. It's more of an impression, a moment of bearing witness as life shifts in irreversible ways, and still somehow finding beauty, meaning, and even peace.

Storyteller

I'm standing in the middle of the road near my parents' house in Santa Barbara. I'm staying with them because I'm sick right now, and my doctors have told me that I should be around people as much as possible in case I have an emergency and need to go to the ER, so I'm staying with them, and every night I am taking a walk. I've been diagnosed with a rare neurological condition that is stealing my senses from me. I've been losing my sight, I've been losing my hearing, and I've been put on this extreme course of drugs that are wreaking havoc on my body.

My memory isn't what it had been before. I'm standing here in the street looking at this beautiful sunset, knowing that I have an emergency brain surgery deadline coming up soon, and like everything else with this condition, my doctor and I, we don't know if this is going to work. I've been on drugs to try and avoid the surgery, but we don't know yet if they're doing what they need to be doing, if they are halting the loss of my senses, if they are helping me recover what I have already lost. I'm standing there and I'm realizing how much of my life I have taken my senses for granted.

Have I ever truly stopped to feel what the light feels like on my face? To see these beautiful leaves shining cold? I think about my friends' faces, all of these people that I haven't seen in years, in months, if I don't see them again before my eyesight is gone, will I remember their faces well enough that if I were to touch them with my fingers, could I still recognize them? Would that be enough? If I never heard their voices again, could I remember them well enough to complete the picture of them in my head that I could only supplement with touch? I think about the things that I want to see, the things I want to do while I have my independence.

This night, I'm standing in the middle of the road, and I'm looking out, and the sun is setting in front of me. Will I remember it well enough to see it in my mind's eye if all of this is lost? I realize that the only thing I have, the only certainty I have, is that I do not know and I cannot know, and that time is what will show me the answers to my questions. Somehow, I have to find a way to come to peace with that uncertainty, with that not knowing. I see the light as it dances on top of the roofs and in the windows of the people's houses all around me, it's setting right between the houses on either side. It makes this a perfect V with this beautiful golden sun right in the middle.

I remember in that moment, it's like time slowed down, and I could see the golden light on the green leaves of the trees. It made every single leaf have this beautiful golden outline. I see the light shining through the hair on either side of my face, making it look almost strawberry blonde. I can feel the warmth of the sun on my cheeks. There's a cool breeze that's blowing, that's rustling the leaves and the trees, but even with that cool breeze, I can feel the warmth of the sun shining through.

In a way, it's bittersweet because it means that I am taking this moment to remember every single detail of this otherwise ordinary sunset on this ordinary street, and yet somehow it is the most beautiful and the saddest sunset that I have ever seen.

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Emily Silverman

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 Hahn. Our executive producer is Ali Block. Our program director is Ashley Petit. 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 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.