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.

Dana 

The first time I felt like something was wrong was literally a month after I'd had the replacement done.

Emily Silverman 

This is Dana. In 2021, she underwent a total knee replacement on her left leg, a pretty run-of-the-mill procedure. Around 850,000 are performed every year in the US.

Dana 

I knew it would be painful. I knew it would be tiring; I knew it would be swollen; I knew it would start feeling better slowly; I knew the incision would heal. And very few of those things happened.

Emily Silverman 

This is The Nocturnists: Uncertainty in Medicine. I'm Emily Silverman. Dana went into her knee surgery hoping that it would ease her chronic pain. Instead, it marked the beginning of a medical mystery. Diagnostic uncertainty is one of the hardest parts of medicine. Some patients find answers quickly. But others, like Dana, embark on a diagnostic odyssey, a prolonged journey where it's clear that something's wrong, but no one can figure out why. Today we're talking about uncertainty, diagnosis, and the role of primary care. Why it's so much more than just a gatekeeper to specialists, and why fewer and fewer doctors are choosing it. Later, we'll look at a small but powerful change that one residency program made to help fix that. But first, Dana.

Dana 

Some of the main things that were wrong, that were, like, alarming to me, were how long it was taking for the incision to heal; that it just wouldn't close. There were just so many markers that I wasn't meeting: walking, standing, being able to straighten my leg, pain. I had gone back to the PA multiple times, either via messages on MyChart, phone calls, visits in the clinic. And it was all just, "Everybody heals differently. Things take time." It was just, nobody's listening.

Emily Silverman 

And so Dana went to the one person she knew would listen to her, her primary care doctor, Dr Sara Hartfeldt.

Sara Hartfeldt 

I've known Dana for close to 14 years. We met more frequently than the "once a year, nice-to-see-you" kinds of primary care patients.

Emily Silverman 

The average primary care doctor in the US manages a panel of 2300 patients. Many only come in for check-ups or refills, but others are complex and require more regular visits.

Sara Hartfeldt 

You know, if you have diabetes, I'd like to see you at least every three to six months. And then, in any given time, there are probably 6 to 12 people that are kind of on the front burner, that I am thinking about, worrying about. Did they ever go see that specialist I wanted them to go see? Are those results back?

Emily Silverman 

And Dana was now one of those "front burner" patients. The redness, the swelling, the failure of the incision site to close: all of it was pretty worrisome to Dr Hartfeldt.

Sara Hartfeldt 

Initially, we could not figure out why she seemed to be having some kind of an allergic reaction all around the incision site. And the fear after surgery is infection; that something has gotten infected. And when you've put new hardware into a joint...If infection gets into hardware, everybody gets terrified. So, there was initially a very aggressive approach by the orthopedic surgeons. She made at least one or two trips to the ER, and then me. How do we make sure that this isn't infected? Is it infected? Check again: could it be infected? Somebody else take an X-ray. Draw her blood again. Doesn't seem like it's infected.

Emily Silverman 

Dana, meanwhile, was getting sicker and sicker. She started having this sharp pain that ran from her replaced knee down to her foot. She developed these blisters inside her mouth and along her tongue, that made it extremely painful to eat or drink. She actually had to go off her meds for depression and anxiety, because it was too painful to swallow.

Dana 

So, on top of my physical health becoming just chaotic, my mental health started getting really, really messy. And I was scared.

Sara Hartfeldt 

It seemed like all of a sudden she was much worse, but now we were looking at something systemic and much broader. The incision had healed. She'd been able to do some rehab, but now she was clearly not feeling well on a systemic level.

Dana 

There was a day, probably about six months after the original replacement, I had woken up in the morning, early... Early, early, early. And, I made blueberry muffins because I was supposed to be seeing my son that day. But by 8:30 that morning, I couldn't walk. I felt really, really dizzy. I called my mom. I said, "You have to come get me and take me to the hospital, because I don't know if I can call you later. So, come get me." And, by the time my mom got to my place, I could barely walk down the stairs to get in her car. By the time we got to the Emergency Room, I couldn't walk, and she brought me in in a wheelchair. Ultimately, they did tons and tons and tons of MRIs and CTs. Couldn't find anything quote, unquote, "wrong with me". The neurologist who came in told me that I was just really stressed out. You know, "You have this history of depression and anxiety, and I think you're just really stressed out, and you're not handling you're stress very well. But the good thing is that that's really easy to fix. " How I was actually lucky.

Sara Hartfeldt 

What the topic of "uncertainty" immediately brings up for me was, the doctor who wrote my letter of recommendation from medical school to Family Practice residency said, "I'm happy to write a letter for you, but I have to ask you one question first. How are you with uncertainty?" That was his question to every student who was considering going into family practice, because so many things that come into our office do not walk out the door with an answer. They walk out the door with the first couple of steps and a referral. And, the challenge can be that you send someone off to a specialist and they say, "Nope, this is whatever is bothering you. It's not an endocrine problem," or "It's not a rheumatological problem," or "It's not neurological." And so, then your patients bounce back to you, and we've ruled out something bad, but we haven't actually answered the question. We've traditionally thought more about primary care doctors as those gatekeepers, sending those people off to those specialists. And increasingly, in our current medical world, I feel like those people are bouncing back to me and saying, "Well, they told me it's not X or Y, but I still don't feel well." One of my favorite phrases, that I say multiple times a day, is the Western medical system is much better at telling you what things are not. But that's an incredibly hard place for people to be. They don't like to be there. They want a name for something. They want an answer. And, it feels like more and more in health care, we can't offer them one.

Emily Silverman 

And this is where Sara found herself with Dana.

Sara Hartfeldt 

So I managed her pain. I managed her other side effects. And, you know, I talked to her twice a week in a darkened room, with her lying on her side, and sobbing a lot of the time. My experience of it is nothing compared to hers, but it was, in many ways, such a sense of despair from my medical feeling of I don't know what to do about this. She is in such distress; she's in so much pain. She is just in such terrible condition. And I don't know what to do. I've tried everything I can think of. Although she has said to me, (and it's true, I did do this), I'd try to come up with some answer, some idea for each thing, even as crazy as some of them were, or as minimal as some of them could be. But that, too, is the fact that I've been at this for 13 or 14 years. I actually had a little Rolodex of ideas, which, you know, some lovely new, well-trained doctor, who's only been at this for a year or two, just isn't gonna have.

Emily Silverman 

Meanwhile, Dana was forced to resign from her job. She had taken a leave of absence: was a middle school teacher, and expected to go back to work, but she couldn't. She was just too sick. With no answers and now, no job, she threw herself into research. And then she hit upon an idea: What if she were allergic to the element of the knee replacement that was made of nickel?

Sara Hartfeldt 

And the thing that Dana came to (on her own), and then brought to me, was concern about the metal in the implant, that she was having a reaction to the nickel. Which, as you go down the rabbit hole of Dr. Google, there is pretty significant places to find information about that. And a sliver of that, or the top slice of that, does have some actual medical evidence behind it. But, at that point, the surgeon wasn't terribly interested in being the one to do the investigation. They don't like to re-operate when there's been a recent replacement. The chances of complications are much higher. And so, it's hard to convince a surgeon to go into a particular case when they question the underlying diagnosis, and when they question the benefit of a re-do and know that the stakes on a re-do are much, much higher. It feels like a set-up. And a person having skin rashes and unable to eat and having all of these other problems. Like, if you're an Orthopedic surgeon, you really work in a certain kind of medical carpentry. What does that have to do with your job?

Dana 

Orthopedic surgeons don't engage with uncertainty. And I know that's a very blanket statement, but it is true in my experience. I was wrong. I wasn't doing this, or I wasn't doing that. Or I hadn't done this, or we should try this. Or, I'm not sure why this isn't happening. There wasn't uncertainty. I was wrong.  Dr. Hartfeldt? We've talked about this recently. I said, "I don't even know if you always believed me." I said, "But you never let on. Even in that moment, if you didn't believe me, you never let on." She listened. She's like, "I don't know if this will work for what you're experiencing, but we could try it." And, as I got sicker and sicker, she actually ended up working for me to get the treatment that I needed, because I couldn't do it.

Emily Silverman 

Together they found a lab in Chicago that could analyze a blood sample, and test for the nickel allergy. And so, Dr. Hartfeldt wrote a letter to the orthopedic surgeon, advocating for him to send this test on Dana. He didn't bite. Dana ended up paying for the blood test herself, and ten days and $600 later, the results came back. And, for context, this is almost a full year after the initial surgery, with her symptoms getting worse each day.

Dana 

And, I remember talking to my sister on the phone before I opened the email that had those results, "What if I'm not allergic to my implant? Like, what is happening to me?" And when I opened it, I literally said, "I'm not crazy." It was the first thing I said to my sister. I'm like, I have not been crazy this whole time. When I went to my surgeon, with that piece of paper in hand, he still, "Well, we don't really know that this happens. This is very rare."

Patricia Collins 

And, so we were struggling with what to do about... how to try to push for...What are the options for getting this thing out? And my brain went to places like going to Thailand, and crazy ideas about where she could possibly get, you know, the kinds of surgery that are done here in the US, or... Because, they did not want to redo it. I finally got a doctor, who I actually knew a little bit, on the phone for a peer-to-peer. And I said to him, point blank, "She's in so much distress. If we don't do something soon, we're gonna lose her." And, I was also pretty regularly in touch with her psychiatrist, and we were in agreement: we were gonna lose her to suicide. If we weren't able to change something about how she was feeling, we were gonna lose her. It came to feel like those were the actual terms of what we were dealing with.

Emily Silverman 

After some searching, they found a surgeon who was willing to meet with Dana about doing a revision.

Dana 

When I first saw him, I went in wanting to know if he would amputate my leg. It wasn't even a question of "We are going to do a revision." It became that very quickly, because he said, "I do think we could try to do a revision."

Emily Silverman 

Dana agreed to give the knee replacement re-do a try. If it didn't work, the surgeon tentatively agreed to amputate her leg. And so, 18 months after the initial surgery, Dana underwent the revision to remove all hardware from her knee that contained nickel.

Dana 

When they took that band-aid off, and I saw the incision... It was like a work of art. The stitches were beautiful. My skin was pink and healthy, and it didn't look infected or sick. It just didn't look wrong. It looked like... like what a knee that had been cut open, stitched back up, should look like. When I went for my six week check-up with him, he asked me what the difference was. And I said, "You took the nickel out." I actually just saw him for my year check-in and. He had asked me how my other knee was. Because I, like... In, like, the real world or whatever, the other knee should have a replacement too. I said, "There... there will be no more surgeries on me at all." I said... "In fact," I said, "if I could get tattoos still..." I love tattoos. Said, "I was thinking I should just get DNO tattooed on my legs, for Do Not Operate." I said, "Some people have DNRs. I don't need that. I need DNO on my legs, because nobody is cutting into my legs ever again." He goes, "That's fair."

Emily Silverman 

Dana's recovery has been slow, but steady. Her symptoms are abating. She can walk up to three miles, and Dr Hartfeldt was able to take her off her list of front-burner patients. But Dana's story isn't just about not being listened to, and having to go out and find her own diagnosis, which is true of so many patients, especially women and other marginalized groups. It's also a story about who stuck with her through the uncertainty, when no one else would. Dana was the one who ultimately figured out what was wrong. And without Dr. Hartfeldt there to listen, to believe her and to push her care forward, Dana may not be here today. Dr. Hartfeldt even told us that the only reason she could do this was because she already knew Dana well, and because she was actually about to leave her job, which meant that she had some extra time. Most primary care doctors don't. They're working in survival mode. And worse, this kind of primary care is disappearing altogether. Which brings us here: Lewiston, Maine, an old mill town, two and a half hours north of Boston, home to 40,000 people and surrounded by miles of sparsely populated rural land. There's unemployment, poverty, rising substance use among families who have been here for generations, families whose livelihoods have been hollowed out by the collapse of manufacturing and the mills that once sustained them. And there's a growing immigrant and refugee community known here as "New Mainers". Here, miles away from gleaming academic medical centers, primary care isn't just important. It's often the only care people have access to. In Lewiston, many of those primary care doctors come from Central Maine Healthcare's Family Medicine Residency Program. But, in recent years, Dr Bethany Picker, the Family Medicine residency program director, has noticed an alarming trend.

Bethany Picker 

We had a disconnect between when residents applied and said what they wanted to do (which was outpatient Family Medicine and care for patients over time, and do full scope Family Medicine) and then what they were really doing, when they were done (which is, about half of them were going off to do further training in order to narrow their scope).

Emily Silverman 

Bethany told us that idealistic med students who entered residency planning to build a career in Family Medicine, were walking away. Instead, they were choosing to specialize in pulmonology, cardiology, gastroenterology, anything that focuses on a single organ system instead of the whole patient. Over 100 million Americans now lack regular primary care, twice as many as in 2014. Yet, only 25% of doctors specialize in adult primary care. There's a lot of reasons for this: the pay, the paperwork, the patient load. But Bethany, a die-hard believer in Family Medicine, had another hypothesis. She felt the residents were completely overwhelmed by the uncertainty of primary care. I've been thinking about the crisis in primary care for a long time, and especially the reasons why doctors are fleeing the field, and actually found it really interesting to consider that uncertainty may be one of the main forces driving people away. It actually made a lot of sense to me. Because inside the hospital, while the patients are sicker, there's actually a certainty to inpatient work. The patients are there, in the hospital. You can swing by and check on them anytime you want. You order a test, and it's done within hours. In the ICU, you have even more precise control over things, down to the rate of the Lasix drip, or the amount of air pumped into an individual patient's lungs. I remember spending all those weeks in the hospital, and then being dropped into clinic. At first, it seemed like it might be easier. After all, the patients are healthier: well enough to walk, talk, drive themselves to the clinic. But you also have way less control. When you order a test, the patient has to schlep to a blood draw center or an imaging center. You wait days for the results to return. You can never be sure what the patient is doing or eating or drinking or if they're taking their medications or not, and there's all sorts of other factors that you have no control over: their income level, their housing situation, their family dynamics. For doctors who love to be in control, this can feel like too much.

Bethany Picker 

There is significant substance use disorder, psychosocial stresses... So you have a lot of those social determinants of health that are "high needs" already, and then you add on into it significant medical complexity, uncontrolled diabetes and hypertension and all those other things, and you layer them all on into one person and give them to a first-year resident and say, "Okay, go." And so, it's very easy to see, very quickly, how that person can get overwhelmed.

Emily Silverman 

And it wasn't just the feeling of being overwhelmed. We spoke to 3 doctors who matriculated through CMH's Family Medicine residency program around this time, and they all expressed friction arising from one very basic, and kind of simple, requirement of the program: the schedule. Here's Patricia Collins.

Patricia Collins 

Really, my first rotation actually, was Family Medicine (of my third-year clerkships). And so, I remember my, like, second day, we had our own med student clinic, and we were seeing our own patients, and I was like, "I'm not qualified to do this." And they were like, "Yes, you are. Like, jump right in."

Emily Silverman 

More strikingly, the residency schedule was set up for hospital work; clinic time was treated like an afterthought: half-days of clinic sprinkled sporadically throughout the inpatient months. The tacit message was, "If you can handle patients in cardiogenic shock in the ICU, surely you can handle a person coming into the office with a sore throat." The unspoken assumption was that clinic was easier.

Chris Decker 

I found, at least for myself, I would end up ordering more tests. It's like I was on the inpatient, because you need the answer now, whereas typically on the outpatient side, you have a little bit of time, so it's not quite as urgent. But it was hard to kind of like, turn that off.

Emily Silverman 

The setup wasn't great for patients either. They'd be assigned a resident as their doctor, but when the patient came to clinic, the resident wasn't there. Or when the resident was there, the patient wasn't.

Alexandria Tremis 

My name was technically assigned to Mr. Jones. My name was assigned as his PCP in the chart, on the record, but he didn't know that. He didn't know that because he never saw me consistently. He saw whoever was available to see him at the time of his needs. And unfortunately, that meant that many times I would see somebody that I would never see again, or I wouldn't see again for months and months, and I wouldn't even really know what had happened to them over that time, and I spent most of the visit just... or the pre-visit even, trying to figure out what had happened since the last time I had seen them.

Bethany Picker 

So in terms of uncertainty, I think a lot of residents come, and they're really afraid to say, "I don't know." And they're afraid to say "I don't know" to their patients. They're afraid to say "I don't know" to their teachers. But it's not saying "I don't know", and then stopping. It's saying "I don't know", and continuing that curiosity, and continuing to ask questions, and continuing to work with people over time.

Emily Silverman 

Over time, that was the problem. There was no version of over time, no continuity, if Alexandria, Patricia, Chris, or any of the residents were seeing random patients at random. Primary care is hard enough, but if residents only see a given patient once, the burden of not being able to help them in that one visit, the burden of saying "I don't know" became much heavier.

Bethany Picker 

It's that reset of, "Well, what can you really do today?" And working with the resident to allow the patient to leave without a lot of changes happening. But that... That's not a failure; that's still a win. A lot of times, they're looking for reassurance. They're looking for validation that what they're experiencing makes sense, and then they're looking for just the opportunity to kind of share it, and have it be known. And sometimes that's enough too.

Emily Silverman 

And so they changed the schedule. Several years earlier, in 2016, a research team from the Center for Excellence in Primary Care at UCSF published a bold paper in The Journal of Graduate Medical Education. The paper began with a striking quote. The quote was, "Let me begin by stating what some may consider obvious and others a heresy, patient-centered care and medical education as currently practiced cannot coexist." They argued that the hospital-centric way we train doctors is all backwards, citing a study from 2010 which showed that that year, Americans had 600 million primary care visits, and only 35 million hospital admissions. So they formed what they called the "Clinic First" model.

Bethany Picker 

We took each four-week block, and instead of sprinkling clinic along within half-days of that four week block, we took that four-week block and divided it in half.

Alexandria Tremis 

For two weeks you were in clinic, and then for two weeks you would go on to a rotation.

Bethany Picker 

That's allowed them to come to clinic and get in the groove a little bit more, for a whole two-week time period.

Emily Silverman 

And that was it.

Bethany Picker 

Before we did "Clinic First", I would watch residents, and I really felt that it took probably 15 to 18 months of their whole residency time to start to feel like they were comfortable in clinic. And now that they do "Clinic First", they do so much clinic up front that it really feels that probably four months in... five, six months in... is when they're really kind of hitting their stride, and they can look at their patients that they're going to see for the half-day, and they know half to three-quarters of them, and it allows them to kind of get some confidence and feel better about their experience with clinic over time.

Alexandria Tremis 

And so much of what we do stems on, at least for me, this fear that I might miss something. What if I miss something and there's a bad outcome? I think that uncertainty sort of lives with you every day in your career. But obviously, the more you know them, and the more of a relationship you've built with them over time, that uncertainty gets abated a little bit. You feel a little more confident that you know the patient's background. When a patient doesn't show up to an appointment, it doesn't necessarily mean that they didn't care to come. It could be that they didn't have a way to get there. And that's such an important piece of building these relationships with patients and getting to know their story, because it all plays into their health in so many different ways.

Emily Silverman 

It's too early yet to report the findings of "Clinic First". But anecdotally, at least within Central Maine Healthcare, it's working. Bethany told us that before "Clinic First", only 30% of residents who pursued fellowship training returned to primary care, whereas after a Clinic First", 60% returned. And actually Alexandria, Patricia and Chris all went on to become faculty within the program.

Alexandria Tremis 

I remember a young woman who presented with a mass, a growth. And I remember seeing her as a resident, and, you know, making an assessment and giving her a plan of care on what I thought needed to be done and what follow-up was recommended. Unfortunately, she fell off the face of the planet for about a year, and that was due to, you know, various factors, including her personal life, insurance lapses, and so on and so forth. Fast forward to a year later, and I end up actually working inpatient, still in residencies. I get a call for an admission, and it's her again. And I have a very vague recollection of her, because it's been a year since I've seen her. I'm pulling up my note from a year ago and trying to jog my memory as much as possible into what her story was. And, lo and behold, she unfortunately had cancer, and that mass was not the benign thing that myself and my preceptor at the time thought it was. Now, had she followed up per our recommendations, could we potentially caught it sooner? Who knows? We admitted her, and we took care of her, and she saw me in clinic again about a month after she was discharged from the hospital for follow-up. We continued following each other. And even though I wasn't managing her cancer directly, I was managing her mental health and her processing the diagnosis. I was managing her dynamic with her family, and how that had changed since her diagnosis. So, I saw her pretty consistently for about a year after that, until I graduated. When I saw her, she asked me where I was off to and when I told her that I was actually staying in the area, and she asked me if I could continue to take care of her once I graduated, I remembered thinking in that moment, she doesn't blame me for what happened to her. She doesn't blame me for missing this mass, and what it was at the time. I have built this relationship with her over the last year, that she sees me as someone that she can depend on. Someone that will support her, that will be there for her, both, you know, psychologically and medically. I now take care of her whole family. Her mom, her, her sister. They all come see me here at the Family Practice office from the residency. It's been three years now since she was diagnosed, and she's still doing quite well, and it's been wonderful to continue to be part of her story.

Emily Silverman 

Thanks for listening to The Nocturnists Uncertainty in Medicine. Our core uncertainty team includes me, Emily Silverman, 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 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 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 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.