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Episode 134
Duration 32:25
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Anna Reisman: Bringing the Humanities to Medicine

Transcript

Harlan Krumholz: Welcome to Health & Veritas. I’m Harlan Krumholz.

Howard Forman: And I’m Howie Forman. We’re physicians and professors at Yale University. We’re trying to get closer to the truth about health and healthcare. Our guest today is Dr. Anna Reisman, but first, we always like to check in on hot topics in health and healthcare. And Harlan, what do you have?

Harlan Krumholz: Thanks, Howie. Though as always, there’s a lot going on that we can talk about. I wanted to just take a minute to talk about this long COVID definition that just came out of the National Academy of Medicine. As you know, I’ve been working on long COVID with Akiko Iwasaki, and we’ve been doing a wide variety of things. So I’ve been watching this pretty carefully. I’m just curious what you think. So, this just comes out. Here’s how they started. The rationale, why did the National Academy of Medicine, funded by the federal government, spend all this time... actually almost a year they’ve been working on this. National Academy of Medicine is a group that’s not governmental but does a lot of work for the government, brings together leading experts, and they serve a convening function. So they’re often bringing people together, discussing an issue, and coming out with a report like this.

And, it’s frustrating sometimes, because you see a lot of effort put into something, and then the question is, at the end of the day, is it advancing it? So this was the rationale: “The lack of a … consistent definition for Long COVID presents challenges for policymakers, researchers, public health professionals, clinicians, support services, and patients.” And then they said, so this lack of the definition is a problem. Because it is. There is a definition, WHO’s got a definition, and CDC’s had a definition, but now the National Academy was going to weigh in. Here’s the definition that they came up with. Long COVID is “an infection-associated chronic condition that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.” Does that help you?

Howard Forman: Well, it helps me in terms of knowing that we’re using three months as the figure. I think at times earlier on, people were using six months. I mean, there have been various things that people have used loosely. And, obviously, I’m not a clinician who takes care of these patients, but we’re going to get to a point where people are going to want to document even ICD-10 codes about whether you do or do not have something.

Harlan Krumholz: My just point is that we’ve had these definitions. Now, this group spends a year.

Howard Forman: Yeah.

Harlan Krumholz: Look. They say, here are the components: “attribution to infection.” No laboratory confirmation or other proof of initial infection is required. Onset, must be present for at least three months. Okay. But can be continuous from or delayed in the onset. So it can occur at the same time or later. More than 200 symptoms are part of this; it can affect one or more organ systems. Equity, can affect children and adults, can affect everyone regardless of how—

Howard Forman: So your concern is that it’s too broad and it doesn’t really narrow things down?

Harlan Krumholz: Well, I think it probably is that it’s too early. We need science. There’s no taxonomy here. There’s no classification system. They’re basically just saying, “It lasts for three months, you don’t need to even demonstrate prior infection.” Which I agree with. But I just don’t know how it helps us. And here’s the thing, when you’ve got something so nonspecific, I don’t know that it advances us.

Howard Forman: So, that I understand. But, for me, what I’ve understood long COVID to be is the post-viral syndrome that, for the first time, because we had a singular wave of a novel virus, that we got to witness a large enough cohort that we actually can learn a lot about it.

Harlan Krumholz: I agree with it. But I’m just saying that this definition—

Howard Forman: No, no. What I’m saying is that there are millions of other people that have post-viral syndromes who have no idea whether it was a brief exposure to cytomegalovirus, or Epstein-Barr virus, or even a cold virus that might have triggered this in them. And, this is a moment where if we can define it somewhat narrowly—not too narrowly—that I think it starts to allow us to collect more information, not less. No?

Harlan Krumholz: Well, I’m just saying. So when you’re doing studies or inclusion, what we needed, I think, was a bit of a taxonomy. There are various different groups you can think of that would be worthy of study as individual groups. Here’s the benefit of this statement, and we can just end it here. We have a lot to talk about today. That they are endorsing that it’s real.

Howard Forman: Yes.

Harlan Krumholz: That’s great. I mean, CDC and WHO already had definitions, but there are many doubters. So the fact that they could endorse it, I think, rather than coming up with definition, they could have said, “One, we are in complete consensus that there is a post-infectious syndrome here. And that what really makes a difference is that it lasts a while and it can include any system. It can affect any person. It can be highly unstable.”

Howard Forman: It makes sense.

Harlan Krumholz: “And what we need is now to start to create a taxonomy of disease.” Because putting everyone under this umbrella is including a heterogeneous group of people, likely with various different causes, underlying mechanisms, potential targets for diagnostic and therapeutic testing. And we need to get on with this understanding of this not just as long COVID, but long COVID type one, type two, type three, type four.

Howard Forman: Right, right.

Harlan Krumholz: So that we can address it. And, I don’t want to criticize earnest hardworking experts who are doing their best, but I’m just saying in the end of the day, I don’t think I’m any better off today than I was yesterday with regard to this. We need to roll up our sleeves, generate the science, and begin to define this in ways that are meaningful for patients that allow us to target what’s underlying the causes are. That’s what we’re hoping to do. That’s why I’m working with Akiko. I’m hoping that what she’s going to be revealed in the lab, what we’re going to be able to do in clinical research helps us understand what should we be targeting in whom, a very more precision approach than just saying, “There’s long COVID, and it’s everything.” Anyway, that’s my hope. Anyway, let’s get onto Anna Reisman. I just want to show that I don’t want to sound so negative, but I’m just frustrated still that we’re not making the progress.

Howard Forman: Dr. Anna Reisman is professor of medicine and the director of both the Program for Humanities in Medicine and the Internal Medicine Residency Writers’ Workshop at the Yale School of Medicine. In these roles, she works to bring awareness to the narratives about patients, institutions, and care that are woven into the practice of medicine. Dr. Reisman is also a co-director of Yale School of Medicine’s Committee for Art in Public Spaces, which we’ll get to a little later in our discussion. Additionally, her writing has been published in The New York Times, The Atlantic, and The Washington Post, among many other medical and non-medical publications.

Dr. Reisman holds a Bachelor of Arts in English from Yale and an MD from NYU School of Medicine. She completed her internship and residency at NYU Medical Center and Bellevue Hospital, where she also served as chief resident. So first of all, I want to welcome you to the podcast. And, I will say upfront that what prompted having you on now rather than at some other time was a piece that you wrote in The New England Journal of Medicine. And we’re going to get to that. A specific piece. But I want to just start off, because it still is a relatively unusual path for someone to be an English major and go on to become a physician and a practicing physician in particular. Can you tell us what your journey was like? Where did you grow up and when did you first become interested in medicine?

Anna Reisman: Sure. And thank you so much, Howie and Harlan, for having me on. So, I was born in Yale New Haven Hospital. And yeah, so I grew up in Hamden, went to school here.

Howard Forman: Your parents were professors here, I believe.

Anna Reisman: My dad was a law school professor. And, my mom worked as a psychiatric social worker. But yeah, so we grew up in the Spring Glen section of Hamden. And I went to Yale as an undergrad. As you mentioned, I was an English major, and didn’t think about science at all, science or medicine at all. I was happy not to take science classes.

Harlan Krumholz: I do want to say one thing, English at Yale is the hardest major. The English Department of Yale is world-renowned. And actually, that is just such a hard major, because it’s just such an emphasis on critical thinking, and writing, and analysis. Right?

Anna Reisman: I don’t know. I don’t know if I agree with that. To me, any science major would have been much, much harder, and much more unpleasant. But, I guess the summer before senior year, read The Magic Mountain by Thomas Mann, and there’s just a lot of focus on tuberculosis, and history of medicine, and it just opened up this whole world that I had been ignoring. And so, I took freshman biology as a senior, which was fantastic. And, decided that I needed to do a postbac, was not interested in grad school or anything else at that point. So, I moved to New York, signed up for the Columbia postbac program, worked in a bunch of jobs at the same time. I worked in a lab at Mount Sinai. Anyway. So somewhere along those lines, I started thinking more about medicine. And here I am.

Howard Forman: And, did you immediately upon graduating, or starting medical school, or whenever decide that you were going to incorporate writing into your career? Or was that something that came to you a little later? And then, I’ll let Harlan speak. Sorry.

Anna Reisman: I mean, I always loved writing and journaling. And, I found in medical school, once I started my clinical rotations, I needed to write in order to just get stuff down that I didn’t have time to think about, that was overwhelming in the moment. So, I didn’t really know about combining a career. I read people like Richard Seltzer, and Lewis Thomas, and Oliver Sacks, and thought, “Oh, these are really cool. Wouldn’t it be nice to be able to somehow combine them?” But I wasn’t really sure how to do that early on.

Harlan Krumholz: I wanted to explore a little bit this piece you wrote in The New England Journal of Medicine. It’s so important for us to think about the people who are not well seen within medicine, meaning the patients who don’t get the attention. Gretchen Berland did a fabulous film on people in wheelchairs that I think opened a view called Rolling. They opened a view on what their view of life is and how maybe we don’t really see their needs and understand them well within the healthcare environments. You are opening a view on people with intellectual disabilities, and this happened to be something that was very personal to you, and in a very powerful piece that I highly recommend to anyone who’s listening. And we’ll put a link to it in the notes. But maybe you can just start by telling us a little bit about your sister, before we get to what you really wrote about, which was her confrontation of an illness.

Anna Reisman: Sure.

Harlan Krumholz: But, can you tell us a little bit about Deborah?

Anna Reisman: Yes. So, Deborah was my younger sister. She died about 10 years ago. And, she had a disease called tuberous sclerosis, which in her case meant that she was severely intellectually disabled, nonverbal, autistic, and had epilepsy as well. It was difficult for my parents to raise her for a lot of reasons, and she moved to a residential school when she was about 10. And, when she was 21, she moved to a group home in Brantford, and that’s where she lived for the last 25 years of her life.

Harlan Krumholz: So, can you just tell a little bit about the story that you wrote about? What happened?

Anna Reisman: Sure. So, my sister was diagnosed with breast cancer. And basically, I write about how each step of the way was much more difficult than it should have been, because of her intellectual disability, her inability to understand what was going on. So even from the diagnosis of finding the lump, she wouldn’t understand to stay still and have a breast exam. I mean, she would get up and try to walk away from the examiner. At first, I thought, “It’s breast cancer, it’s probably early. She’s otherwise fairly healthy and it should be able to be straight...” I didn’t anticipate all of these problems. But then, as soon as we sat down with the team of surgeons and oncologists, it became painfully clear that each mode of treatment had so many potential problems and that the standard of care was really going to be difficult, if not impossible.

Howard Forman: We had Tara Lagu on the podcast probably a year ago talking about a healthcare for the disabled. We don’t serve these populations well, but we also don’t do the types of research that might inform decision-making for these patient populations. Part of it has to do with biomedical ethics and even getting informed consent on these individuals. But you make some recommendations in that piece about how we could at least do better and be better. Do you want to just reflect on that? And it ties in so much with what Harlan has taught me over the years as well.

Anna Reisman: Sure. One person I spoke to who was a specialist in neurodevelopmental disorders for children and adults, which is very unusual, she had suggested a doula for situations like my sister’s, and somebody who would be trained in spending time with people who are nonverbal, who might not understand what’s going on, and being that connection between them and the family, and the healthcare providers. So I thought that was a wonderful idea. And then, the other thing I emphasized in that article was just how pediatric oncology is just a different world. And, so much of pediatrics, it’s a kinder and gentler world, where people are seen more. And I think, pediatrics generally has more experience with people with intellectual disabilities. That’s where the focus is. And a lot of them continue with their pediatricians into adulthood, just because few adult doctors are trained.

Harlan Krumholz: I think this whole topic is one in which hits on this fact that we’re taught about idealized patients in verticals. Here, let’s teach about cardiovascular disease, let’s teach about GI disease. Let’s teach about allergy and immunology. I remember one of the most challenging patients I ever had had mental health issues. So he came in with valve disease that was sure to kill him if he didn’t have surgery. And we couldn’t get him to the consent. He wasn’t in a position where you would take away his ability to decide about his body and his ability to cooperate with the recovery was a question, because of his mental illness. And so, in the end, the heart disease became threatening, because we couldn’t follow the standard of care, but standard of care exists in a vacuum as if it’s an idealized individual who doesn’t have anything else but that problem.

And I thought one of the fascinating things you did was—I can look in a textbook and there is a section on, what they call special populations, which really, by the way, doesn’t necessarily mean that they’re not very common; it’s just thinking that there are people who have something else that might layer on top of the problem this textbook chapter is talking about, so that you might have different considerations, but it’s very thin. There’s not as, how he’s suggesting, much research on it. And we’re poorly equipped as physicians. We’ve never been trained. Our medical schools aren’t replete with how we even process this. We’re not equipped to handle slow. We should be—we’re a medical system. Most people have to move slowly who are dealing with physical issues. But, for us, we got 10 minutes of this appointment—get them in, get them out. We’re at a fast clip, and that’s not how many people are working.

Do you see a path forward, both in education and in the way in which we set up our structures so that we are better accommodating this, because we’re interested in throughput right now in healthcare, this is all about RVU accumulation—relative value units. How many patients can you see in an hour? I mean, we’re being judged as our productivity by how many people we’re seeing. And yet, our patients have very different needs, and we’re not given the space or credit when we’re handling people who are difficult. A patient like your sister may take an hour or two, in order really to manage properly. And there’s no space for that. I mean, how are we going to deal with that?

Anna Reisman: My sister, she lived in a group home in Branford [Connecticut], and we found a concierge doctor who took care of a lot of people with intellectual disabilities, and it was great. She knew how to do it. She would make house calls sometimes. Appointments were not rushed. And so, we need more people like that who have the experience.

Howard Forman: I want to make sure that we have time to talk about three related topics. One is your leadership in the Humanities in Medicine program. The second is your leadership in the writing program that you’ve worked both locally as well as with the VA Boston. And I also want to make sure we talk about the program for Art and Public Spaces at Yale. And, feel free to touch on whichever one is most—

Harlan Krumholz: Well, I’m going to say my preference, because we’re not going to get to all this. But she’s been doing this inventory of what art is on the walls at Yale and what it is projecting about these portraits. And, can you just tell us a little bit about that project and where it’s going?

Anna Reisman: Yeah, I was hoping you would choose that one. Yeah, so this project started in 2018 or ’19, and it really was generated by students who had put together some demands. And one of the demands was to reassess what was on the walls and to specifically look at the historical portraits. And, these “dude walls” that Rachel Maddow named, which are at so many academic institutions. And you just have walls and walls of old white men in oil paintings. And so, Yale has that in its flagship building at the medical school. And, yeah, they’ve just been up there for a long time gathering dust. Nobody was really keeping track of who they were. There were no labels. So, other than the 13 or 14 deans, there were another 40 or so portraits. And we didn’t really know who they were. Maybe their name was on it—not all of them. And so, the then dean, Dean Alpern, put together this committee and asked us to figure out who these people were and why they were on the walls.

Harlan Krumholz: “Who in the heck have we got on the walls?”

Anna Reisman: Right? I mean, it seems so absurd that we wouldn’t know, but we didn’t know. And so, we hired—this was during COVID, the first summer of COVID—and we hired some history of medicine graduate students and history of art graduate students. And they did a lot of research into figuring out, getting some background information on the dudes. And they found all kinds of interesting things. So many of them, not the deans, but so many of the other ones really had a very, very loose connection to the medical school, that a lot of these were put on the wall for the centenary of the school in 1913 or something like that. And so, I just picture people going up to their attics and, “Oh, here’s...”—dusting off a—“yeah, didn’t Uncle Joe or Grandpa or whatever have some connection to Yale Medical School?” And so they just decorated the walls, and there they’ve been for decades, which is absurd.

Harlan Krumholz: Did you find anyone who you said had some sordid…?

Anna Reisman: Yeah. So, of course, we were also looking to see if they had things that might not be so palatable these days. And, there was one dean named Stanford Hope Baines from the 1930s, Stanford Baines... no, Stanford Baines Jones. Baines Jones. Anyway, his portrait used to be immediately to the left of the dean’s office if you were facing the dean’s office. So you probably both walked by it thousands of times, and you probably never noticed what I’m going to tell you, which is that, if you look very carefully, there are books painted in, and one of the books is a “History of the Confederate States,” which is just like, “What?” And—yeah—and he did have a connection. His grandfather was in the slave trade, and he clearly also had certain thoughts on that that he chose for that book to be there. So, that’s interesting. So, anyway.

Harlan Krumholz: Did you do anything? You painted it over?

Anna Reisman: Right. I took a Sharpie and went like this. No, no. So now, the portraits have been moved down the hall. They’re spread out a little bit more. We have the labels that have contextualizing information. So, it’s there. So we have the information there for people to see and to understand.

Harlan Krumholz: And we’re celebrating women more now. We’ve got a whole hall celebrating women, right? You’ve made differences like this. You said this has to be more—

Anna Reisman: Right. So, the perpendicular hallway to where the deans are and the other people is now filled with beautiful, colorful photographs of women faculty, and you walk down that hallway and it’s a very different feeling. You feel like they’re saying, “Hey—welcome.”

Harlan Krumholz: And a portrait that celebrates our friend and colleague Margie Rosenthal, who tragically died several years ago. But that is in a major public space that I think is also a triumph to be able to have someone like that.

Howard Forman: I want to tie it back to Margie a little bit, just as a final discussion point. And that is that the writers workshop that you have led and collaborated with, and I think at times co-led, that is an incredibly productive activity at Yale. As Harlan said, there’s a very robust history at Yale of physician authors. We’ve had several of them on the podcast, but this is not just the Shep Nulans of the world, or the Seltzers, or whatever, or the Anna Reismans. These are people who are writing their first op-ed, who are writing their first short story, or, in the case of Marjorie, people who basically narrated their own disease and how it affected them and their family in their final years. Do you want to just say a few words about how important that is to the culture of Yale as a medical school?

Anna Reisman: Sure. Yeah. So, we just celebrated our 20th year of the writers’ workshop. And so, as you alluded to, we take people who are either experienced writers or who have no experience but just want to learn the basics of writing. And, in medicine, like what I was saying earlier on when I was talking about how I got here, we carry so many stories within us. There’s so much potential to get our voices out there. And yet, without some knowledge of how to write, remedial writing, we just carry these stories and they don’t go anywhere, and they don’t do anyone any good.

And so, I think it’s incredibly important to provide these different ways, either through personal essays or op-eds and opinion pieces through reflective writing. It’s a smorgasbord, and people can pick what they’re comfortable with and just take it from there. Just getting thoughts down on paper, reflective writing is the first step towards publishing. And some people just want to reflect and think and use that as a way to decompress, and other people will take it to the next level and get it out there to the public where it can affect change. So it’s all good.

Harlan Krumholz: Well, it’s a pleasure to have you on the podcast. Thank you so much for sharing a lot of personal stories and the contributions that you’re making to medical school, and it’s wonderful to call you a friend and colleague.

Anna Reisman: Thank you so much.

Harlan Krumholz: We really appreciate you. Well, that was a great interview. Wow.

Howard Forman: She was awesome.

Harlan Krumholz: Lots of good stuff in there. But now let’s get to my favorite part of the podcast. What’s on your mind this week, Howie?

Howard Forman: Yes. It’s only been a few weeks since we last talked about H5N1 bird flu. But there’s been just enough new info that I think it’s really worth updating our listeners. And, while we’ve been taping this, the World Health Organization actually just tweeted out even more updates that are related. So, first, it’s important to understand what would really change everything and start to make this a big news story, that would be human-to-human transmission and particularly respiratory transmission. That would be a game changer. That’d be very concerning. We don’t have that right now. This type of virus historically has been very lethal in humans through respiratory infection, but it’s only gotten to humans via exposure to birds until recently. So, now remember, these viruses are constantly mutating, and Darwinian selection drives them to achieve greater spread and more hosts. So it’s not surprising that this is no longer just the bird flu. This has already made the jump from birds to cows, as we talked about, and mammals.

But to this point, most of the infections have been nonrespiratory, or at least not dominating respiratory symptoms in the cows. And so far, it seems to be spread via the milking process in dairy farms. And until recently, two separate eye infections that likely came from contact spread were the first two human infections from this U.S. outbreak. But, first news story, last month, we had our first human infected with respiratory symptoms, but that still likely came from a cow, and it was also not severe. And then, we learned also just a week or so ago, a couple of weeks ago, that pasteurization, remember we talked about unpasteurized raw milk being potentially very dangerous. We just learned now that pasteurization is fairly effective at destroying the virus by an order of more than 10,000.

So, out of every 10,000 plus particles, only one survives pasteurization. And as you recall, this was our biggest concern, whether pasteurized milk supply was endangered. In the same study, by the way, they did show that raw milk can in fact infect mice, including respiratory symptoms when taken orally. So, this should be a concern to people, and I would still tell people, “No raw milk.” Finally, what we learned just in the last week is through a controlled experiment using ferrets. And ferrets is the animal model most often used to study influenza. That, one, it is lethal in ferrets where a seasonal flu is not lethal in ferrets. And two, it does not spread nearly as efficiently via respiratory droplets, as seasonal flu does. So that’s good. But it does spread efficiently through direct contact, which goes along with what we’ve been seeing with the cows. So this would seem overall good news, not terrible news. But the problem is, it’s constantly mutating, and there will be more mutations. And we are not tracking this closely enough to cut it off. And we do not know when it’s going to become more infectious.

What we do know is the number of herds and number of states in which this has infected cows has increased a lot over the last few weeks. We need to do much better surveillance testing in humans and cows. We need to accept that this will mutate—how fast and how infectious and how lethal remains to be seen. And we got to be careful to not be the next Wuhan. We’ve looked down at Wuhan and the Chinese for doing too little at the time. They first became aware. We may be in the same position right now. I’m not looking to scare anybody, and I’m not saying we’re going to have an outbreak this year or next, but I think it’s getting closer than a lot of people are willing to admit.

Harlan Krumholz: So, Howie, I mean, what is really actual here? So you start identifying some cows are infected. It’s not really harming the cows right now. And you’re not going to do like in China, when they were doing the bird flu, they killed all those pigs. There were like millions of pigs that were killed. We’re not going to kill the cows.

Howard Forman: So, we could be doing both polymerase testing as well as serology testing to find out who has antibodies, both in cows as well as in humans, to just figure out where it is, because it is possible, Harlan, that there are people that are infected and we’re just not finding them.

Harlan Krumholz: Yeah.

Howard Forman: And it’s possible that someone passes through a farm, has it, and does have respiratory symptoms. And if you remember the early part of even the pandemic in America, a lot of us, we didn’t have tests available. A lot of us were like, “Maybe this person in the ICU who has this sudden onset of what looked like ARDS or adult respiratory distress syndrome, maybe that was COVID.” And to this day, we don’t even know the answer to that. We don’t want to get caught on the late end of it, discovering that we have two or three patients at Yale Haven Hospital that have it at a certain point.

Harlan Krumholz: I mean, and we can wrap this up, but you’re raising, I think, to me, a bigger issue, which is we’ve just been through the pandemic, and we have no national plan for how we manage infectious outbreaks in the country. We have ways to go out for singular things, but we don’t have any systemic way to manage this in the country. And, everyone’s just tired of talking about the pandemic. So instead of—

Howard Forman: And farmers are afraid of this, and I understand that. But we’ve got to give them a reason not to be afraid of it.

Harlan Krumholz: Yeah, yeah. Well, we have an underfunded CDC. We don’t have much enthusiasm right now in developing strong surveillance system. It is a perfect storm for the next one, right?

Howard Forman: Yep.

Harlan Krumholz: Hey, thanks for sharing that.

Howard Forman: Thanks.

Harlan Krumholz: You’ve been listening to Health & Veritas with Harlan Krumholz and Howie Forman.

Howard Forman: So how did we do? To give us your feedback or to keep the conversation going, email us at health.veritas@yale.edu or follow us on any of the many social media out there.

Harlan Krumholz: And we want to encourage you to give us feedback or send us questions. Rate us on the podcast platforms. We always read your reviews, and it helps listeners find us.

Howard Forman: And if you have questions about the MBA for Executives program at the Yale School of Management, reach out via email for more information. Or just check out our website at som.yale.edu/emba.

Harlan Krumholz: Health & Veritas is produced at the Yale School of Management, Yale School of Public Health. Thanks to our researchers, Ines Gilles and Sophia Stumpf, and to our producer, Miranda Shafer. Extraordinary people we’re so lucky to work with.

Howard Forman: Very fortunate.

Harlan Krumholz: Talk to you soon, Howie.

Howard Forman: Thanks very much, Harlan.

Harlan Krumholz: Talk to you soon.