Dr. Randi Epstein: Medical Storytelling

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

Howard Forman: And I’m Howie Forman. We are physicians and professors at Yale University, and we’re trying to get closer to the truth about health and healthcare. Harlan, what’s caught your attention this week in healthcare?

Harlan Krumholz: Well, thanks for asking, Howie. I was thinking about what might be good to talk about this week. And yesterday, in fact, we published a paper in The BMJ, the British Medical Journal, on “Racism as a Leading Cause of Death in the United States.” It was a piece where we put forth this idea that we should be thinking about the differential in mortality between Blacks and Whites as a cause of death in itself, and maybe labeling it, calling it out, as from racism. I mean, there’s no natural reason that Black people... biological reason Black people should have higher mortality rates than White people across a wide range of causes. It’s a social issue. I mean, race is a social construct. And in our society, Black people are disadvantaged from the moment of birth with regard to their health outcomes.

And what we did was, we said, “If you look at the difference between Blacks and Whites across causes of death, all traditional causes of death, and you added it up and you said, ‘How many lives are lost extra?’” I mean, “beyond”—if Blacks had had the same mortality rates as Whites, you’d say, “None,” but the fact that they have elevated mortality across all these causes, their mortality rates are much higher. There are many more deaths because of that differential. And then you said, “If that were a cause of death in and of itself, how would it stack up against the other causes like heart disease, cancer, neurologic diseases?” And it turns out it’s bigger. It’s bigger. That delta, that differential is actually the leading cause of death among Black people, is the elevated risk they have compared to White people. Now, I know this is a little bit of a framing issue because that differential is made up of all those other causes, but it’s the difference.

And we did it because we wanted to suggest that maybe we as a country should be reporting out this differential, this excess death due to being Black in this country, essentially, and start thinking about developing some grant strategies, because also when we looked over the last 20 years, there’s been no real improvement in that difference and the difference in mortality rates between Blacks and Whites. So in the title, what seemed natural to me, because the reason we’re in this situation is because of what’s going on in this country over 400 years and where we are today and where we’ve been, and the circumstances that Black people find themselves in this country. Sure, there’s issues of personal responsibility, but you’d have to, I believe, be blind not to see the structural racism that’s embedded in our society that’s a big contributor.

We called the article “Racism as a Leading Cause of Death in the United States.” And the reason I’m bringing it up here is, I just wanted to share with you. It was interesting, I got some feedback on this. Some people came to me and said, “Well, you’re doing a great disservice by attributing it to all the racism. How do you know it’s racism?” And I thought that’s a peculiar thing to say, because I said, “Well, what’s your alternative hypothesis?” And so, anyway, I hope it will stimulate a lot of discussions. And I believe, like I said, we need to be developing these equity metrics, these goals for ourselves as a society, and then strategies that are going to go after this if we really want to improve. How about you, Howie? What was on your mind?

Howard Forman: Yeah. So look, I saw your piece yesterday, and I read it, and it’s really powerful. It’s tightly written. And I really suggest that everybody listening to the podcast go read it, because it’s easy to read, but it really tells an important narrative about truth. And last Friday, an article came out in Health Affairs that caught my attention on the same basic topic. Authors at the University of Chicago, they use natural language processing and machine learning. And by this I mean that computers analyzed the text of actual patient records, but not encumbered by anybody’s subjective feelings or interpretation of those words. And they found that Black patients had two and a half times the likelihood of negative descriptors used in their notes compared with White patients, even after accounting for demographic factors, even after adjustment. And without the adjustment, the figure was even higher.

And they acknowledged many limitations of this work, which is innovative in many different ways. And it’s really the first of its kind. But their conclusion was apt, and I’m just quoting it here, “Our findings raise concerns about racial bias and possible transmission of stigma in the medical record.” Too many people will be unsurprised by these findings, but yet others will be shocked. And I’m hopeful that by shining a light on this topic, there will be more self-reflection and teaching targeted at removing all tacit and explicit forms of bias from medical charting.

And it just so lines up with what your paper was from yesterday in terms of us starting to look at ourselves, look at our involvement in the system, because none of us believe that we’re racist. It’s hard to find a physician who will claim to be racist. It’s hard to find a health system that would claim to be racist. But somehow, the structural impediments that we’ve imposed and used over these hundreds of years, as you’ve pointed out, have created this additional barrier to good health and good outcomes. So I really am thankful for your piece and thankful for the authors at the University of Chicago.

All right. Our guest this week is Randi Epstein. She’s a writer in residence at Yale Medical School, a much-loved lecturer in a highly popular class at Yale. She’s one of our own, having graduated from the Medical School in 1990. She’s the only person I know to have an MD, a graduate journalism degree, and an MPH [master’s degree in public health]. She’s also an adjunct professor at Columbia University Graduate School of Journalism. She’s the author of several books, most recently Aroused: The History of Hormones and How They Control Just About Everything. I consider her a friend as well as a colleague, and I am delighted to welcome her to the Health & Veritas podcast. Welcome, Randi.

Randi Epstein: I’m so—

Harlan Krumholz: You know, it’s not fair when Howard gets to give such a great introduction. Wait a minute. I consider her a friend and a colleague. Can I go on and on too? Because she is amazing.

Howard Forman: You have that right.

Randi Epstein: Any kind of ego boost is always welcome. I am thrilled to be here because I’m a huge fan. I think I’ve listened to every single one of your podcasts. And I feel so much smarter because of everything I’ve learned from Health & Veritas.

Harlan Krumholz: Well, we’re so grateful to have you here today. I really enjoyed your book Aroused. And one of the things I wanted to ask you was, how did you find all those stories? You taught me about some things I really didn’t know about, and it seemed like you’d have to dig for some of that information. So I really thought that... As I was reading, I thought like, “How did she even know about this?” It’s a story of hormones and the effect that they may have on our lives. And I also appreciate a book was..maybe how you showed us along the way, as we learned about hormones, there was a lot of misconceptions and misperceptions and actually cruelties along the way in the way people were treated. So, I don’t know; I was just wanted to start off by saying, when you decide to write a book, how do you construct it? I mean, how do you figure out what stories are going to make up that book?

Randi Epstein: I always think about what topic I’m going to write about. And then I actually will write this on a page: “Topic, Story, Ramifications.” So you could have your topic, like growth hormone. I knew I wanted to do something on growth hormone. But then what’s the story? And honestly, it comes from just reading a lot of books, reading the scientific articles. Often I’d find my story in an endnote or in a one-off comment that someone mentioned, and then I’m like, “Oh, wait.” So then I do searches in newspaper articles that were written around the time. And also from interviewing experts, and sometimes doctors will mention some support group or some patients. And yeah, I go down all these rabbit holes, and then it’s figuring out which story tells the point that I’m trying to convey.

Harlan Krumholz: Well, take the story that I read. You had this chapter that was called “The Fat Bride” in which you talked about an immensely obese person who became an object of interest. And I say “object” just because she was really objectified. And someone proposes to marry her because he’s going to become her manager and charge people to see her. But there’s a story under that that has to do with medicine and her body being exhumed and examined and... How’d you find that story?

Randi Epstein: Yeah. And that one I got into because when I started looking at some of the early days of endocrinology... and some of it came about in the late 1800s with the professionalization of medicine, but doctors became fascinated with these people that were called freaks. I mean, there were freak shows. It was awful. And I think my first thought was, how awful these people were that ran freak shows that put people on display for being too short or too fat or too hairy or things that we now know are endocrine issues. And my original thought was, “And there were these wonderful, kind, compassionate doctors trying to help these people.” And then the more I dug into it, there weren’t the good guys and the bad guys because sometimes these doctors weren’t helping these people that were different from the norm. They were using them often involuntarily as research subjects for their own gain to understand the human body, to understand what’s going on. And it got me thinking, “Wait, but at least these people who were objectified by both society, by both these people that were running circuses and by the medical profession, they were at least getting paid and had some agency in taking the job.” So it got me thinking in terms of who all these players were that were taking advantage of these people solely because they were different. And there was zero empathy. And so I read books by scholars in terms of this whole history of the freak show. It was so American. You can blame the people that ran these shows, but blame all the people that paid to go and gawk. You know, there’s a lot of blame to be thrown around.

And that led me to reading old newspaper articles. And that’s when I found this story of this obese woman who died. And she not only was taken advantage of in this whole freak show system, but when she died, they had to have guards around her grave because these grave robbers were going to go in and sell her to doctors. So that’s what got me interested. And I thought her story really epitomized what I thought were these weird early days of endocrinology.

Harlan Krumholz: Well, I never really thought about that as “endocrinology” until I read your book. That’s who these people were. They were just people with diseases.

Howard Forman: Yeah. So one of the things that distinguishes you from so many others is that journalism is a core part of your career, and medicine is a part of your career. There are a lot of doctors who have written a book or done some writing. And there are certainly a lot of journalists who delve into the healthcare and life sciences space, but you’ve really embraced both. I know you’re already working or thinking about your next book. What motivates you? You don’t have to tell us what that book is, but what motivates you to—

Harlan Krumholz: No, we’re not letting her off the program until she tells us.

Howard Forman: I know! But I mean, you’re going to devote a couple of years to this, as I understand it. What motivates you for that specific topic, and tell us how you think about it when you build up to that.

Randi Epstein: Well, what I wish, I always wanted to take the easy route and find a concrete story that has a built-in beginning, middle, and end. The Great Man story: isn’t this guy wonderful? He was born. Then he did this research, got the Nobel, then he died. And then you just write it. And that would be really easy. But I end up being drawn towards things that I don’t understand or that are in this gray zone of medicine. I’m very interested in trying to grapple with things that are more nuanced. And so I take on subjects that usually it comes from my research from one book. I find something and I’m like, “Well, that doesn’t really make sense,” or “It’s not so clear,” or things... I’m very interested in topics where we see both the tensions and also the ties between science and society.

So hormones, you know, people always have this knee-jerk reaction. “Well, it was just a hormonal thing,” or, “Maybe my hormones made me do this,” which got me thinking, “Well, do hormones control everything? Do we control them?” How do you even break apart... If we are our chemistry, how can we say, “Let’s take control of it?” because we are just made up of our chemistry. And how do doctors make decisions when the information isn’t all clear-cut? So those are the sorts of things that draw me to subjects.

Harlan Krumholz: So one thing. And for folks—Aroused is just one of your books. You had another book, Get Me Out: A History of Childbirth from the Garden of Eden to the Sperm Bank. You’ve gone through this now a couple of times. Here’s a question for you. What makes it worth it to you? The reason I raise this, it’s such a gamble. Your upfront investment is so deep, and you really don’t know how the world is going to receive it. And then there’s this very narrow period of time when you come out where you get a chance to get traction, to engage and embrace it. And the distance between that and the time when it ends up on the residuals or on the table in the back as opposed to in the front window can be short.

And I don’t know. When you think about it, I mean, it’s a scary notion to invest so much of yourself for so long without knowing yet exactly how it’ll be received. It could even be an amazing piece of work, a wonderful contribution to the world, but you just don’t know what’s going to go on. I mean, there could be a war in Ukraine that gets everyone’s attention. And now, no one’s even talking to you about your book. How do you find the courage? And have you felt in the books that you’ve written, that you look back and you say, “Yeah, that was worth it”?

Randi Epstein: Yeah. I mean, the truth is I spend a... It’s an emotionally labile time for me. I have my good days and my bad days. And some days I’m like, “Why am I doing this?” But I don’t think anyone who writes books can really think about the end result of, “This better be a bestseller.” I mean, honestly, if you want to do a bestseller, you could just write a diet book, like any of us, right? If you have an MD after your name, you could just come up with some... Find a food that’s super common and tell people that it’s dangerous and they have to avoid it so that they drive every waiter crazy and they drive their family crazy and they can’t eat dinner at people’s homes. And do a book like that, and that’ll become a bestseller. But you may not be so proud of it or feel good about what you’ve done.

So I think what motivates me isn’t so much... Or put it this way. When I’m in my slumps of, “Oh my God, why am I doing this?” here’s what keeps me going. One is, when I write a book, it gives me the opportunity to talk to brilliant people like the two of you. I can reach out and say to these amazing scientists, “I’d love to come and speak with you about your work.” And I get to delve in and learn things. For this book, for instance, I had a bunch of people explain to me... And I did some reading like, “How does radioimmunoassay actually really work? I never understood the physics of it.” So there’s that wonderful learning curve of understanding things and the connections that I make.

I mean, we talk now through the pandemic of this lack of connections and feeling lonely. And I do just say, not just the scientists and the doctors that I speak with but a lot of the patients who have shared their stories with me, many of them become friends. I really connect with these people. And so the journey I’m on during it—the recording process, what I’m reading, but all the people that I connect with—make the process that much better.

The writing part can be a struggle at times. But I think, again, it’s more about the learning process and what I want to communicate to the few people that might pick it up. And if I can just educate a small group of people and have them see something more clearly than they hadn’t before, I think that that keeps me going.

Howard Forman: It’s not just your writing that has advanced this whole field. It’s also the generativity that you’ve been involved in, which starts at Yale. And I can’t explain why Yale is so productive with authors, but for the entire history of the Medical School, there have been a lot of really great authors that have come out of the Medical School. And in recent years, Lisa Sanders, Paul Kalanithi, his wife Lucy Kalanithi I think is her name, and more recently Dhruv Khullar, a recent student, all have been writing more and more. And you now are teaching a class at Yale to the undergraduates. And I’m just curious: What is the best advice that you can ever give? I know you started off by saying how you organize things, but what advice do you give young premed or physicians about moving into the field of writing?

Randi Epstein: Just doing it, I mean, which sounds easier said than done. But I think especially with premeds or students or people that have gone to medical school, we kind of always knew that the more hours you put in, that’s what your success is. You get on a treadmill to go to med school. It’s tuned up a little faster than you’d want, but you hang on, and you’re going to be a doctor at the end. And the more work you put in, the more rewards. And writing doesn’t always work that way. You can put many, many, many hours into writing something, and it gets rejected. But my most prolific colleagues send it out to somewhere else or rewrite or keep going. So a lot of it is, I guess, dealing with the rejection but also finding your voice. And you’re not going to find your voice and you’re not going to improve in your writing unless you’re getting words on paper and reading a ton.

Howard Forman: I wanted to ask one thing. At the end of every podcast, we always ask each other what might keep you up at night. I’m wondering if there’s something that worries you or that keeps you up at night.

Randi Epstein: Yes. What keeps me up at night is when I read about... We talk about fake news all the time, and there are people that really just don’t know and that are putting out their fears about the vaccine or whatever we think about. And they’re doing it out of naivete, or they just don’t know or from what they read. What keeps me up at night is when I know that there are physicians or scientists that know better but are... whatever... selling their book or selling their pill or selling their supplement. And they know what they’re doing. We call them charlatans or quacks or whatever, but that’s what keeps me up at night and drives me crazy. And I’ve interviewed a few in my book. I have the story of one doctor in my book who I thought was a real charlatan, but I went to a meeting, which I do have to say, this one meeting of all these doctors that I thought were cutting corners and doing stuff just to make money, I went to this meeting thinking, “Well, this will be kind of funny to see some of the wacky stuff that goes on.” And I sat there the whole time getting angrier and angrier. And I kept texting my husband who’s not in medicine. He’s a hypochondriac, but— among other things. He does do other stuff other than worry about his health. But I was texting him the whole time going, “This is so annoying. You’re not going to believe what this doctor said. You’re not going to believe this.” And then finally, I think he was like, “Just leave.” I think he was getting annoyed with my text because it doesn’t keep him up at night, but it keeps me up at night. So those are the kind of things that keep me up at night. Yeah.

Harlan Krumholz: Yeah. We’re in this moment of misinformation. That’s an extreme form, but we’re seeing it in all sorts of different ways. I would say that what I appreciate about your books was how well-referenced they are too. So people, when they’re looking for books about medicine or when people are delving into subjects, I can tell you that when you see a book that’s so well-referenced, you can go to the back of the book and see, “Where did all this come from? I want to read more. Where would I look?” That’s, I think, a signal that the author has spent the time to really deeply research the topic and not only can speak fluently about it but is willing to provide the backup for what they’ve said. You’ve done that in your books. I think that that’s just a terrific thing.

So anyway, you didn’t ask us to do this, but I just want to give a shout-out to Aroused, which you published in 2018, and Get Me Out, which you published in 2011. And so here at the end, we want to say thank you, but do you want to tell us what you’re going to to do next?

Randi Epstein: I am working on a book on the science of stress, which I’m so stressed out about. It’s making the process take longer. But I think I understand what’s going on in my brain that’s clogging my thought process. So there it is. Yeah. And actually, it didn’t come about because of the pandemic, though I did sell the book on the Friday the 13th of March 2020, when I was like, “Is the world going to shut down? I don’t think so!” That was my thought.

But the book that I’m working on now really came about because when I was working on the hormone book, I would read things like, “Oh, there was a study that said your cortisol is this. And that means that’s how stressed you are. And your cortisol does this. And stress is cortisol.” And I really knew nothing about it. And I said to my editor, “I don’t know much about this topic, but it seems to me stress is much more than a cortisol level. And there might be a book in this.” So she was excited by the idea. But from saying, “I think there’s a book in it,” it was probably several months, maybe close to a year, of then digging around and talking to experts and reading about neuroscience to figure out what I wanted to write about stress. And I’m in the thick of it now.

Harlan Krumholz: Oh, I think that sounds so terrific. Make sure you include a chapter on post-hospital syndrome about how the stress undermines our ability to recover from illness because that’s another... But anyway, that’s such a terrific topic. Anyway, well, thank you so much. Really appreciate you taking the time to be with us. And we look forward to seeing your next book.

Howard Forman: Thank you very much, Randi. We really appreciate you coming here and hope we’ll have you come back soon, probably even before you do your next book. But thank you again.

Randi Epstein: I am so appreciative. I’m really appreciative. It was so great to see you and hear from you. And I’m just going to keep listening and learning from your podcast.

Howard Forman: Harlan. What’s something that inspires you or keeps you up at night?

Harlan Krumholz: Okay. Well, I don’t know whether it inspires or keeps me up at night, but it’s impossible this week not to talk about the four football games that took place last week. So I realized... And not all our listeners may be football fans, but those were the most amazing games ever, all decided in the last play of the game. And I tell my wife, like, “I’m trying to quit NFL.” Their policies are not enlightened. I know that these people out on the field are putting themselves at extreme risk and are often going to be suffering throughout their lives, this issue about the dementia and the CTE [chronic traumatic encephalopathy] and the damage from the concussions. And I keep thinking, like, “This just isn’t the kind of game that...” And then just, it pulls me... Like they say in The Godfather, “And it pulls me back in.”

And it’s just so much fun to watch. And that last game, I’ll just say one last thing about it. So the lead changes four times in the last bit of the game, and Kansas City is playing Buffalo. Buffalo, gosh, they deserve a winner after all these years. Kansas City’s playing Buffalo. And 13 seconds left, this team surely can’t score any points in 13 seconds. The game’s got to be over. And Patrick Mahomes, the quarterback of the Kansas City Chiefs, takes them down the field, and they tie the game and then ultimately win it.

I got no further deep life lessons out of this except for, it is something that you grow up on in this country and many people grow up on in this country. And I’m from, by the way, Dayton, Ohio. So I’m rooting for the Cincinnati Bengals this weekend. But it was just an amazing weekend for sports. So I’ll just revel in that. Maybe next week, we’ll talk about the Olympics, which is also complicated. You root for the people, but then there’s all these other issues and politics that are taking place. So it’s hard to enjoy sports without some guilt these days.

Howard Forman: I’m with you. I will say I have not been an intense football fan for decades. And I even watched three of the games, at least parts of them. I watched the last 10 minutes of the Tampa Bay game from the emergency room just because I was too into it. So it was an exciting series of games. And I may, in fact, watch some of the games over the next couple of weeks.

Harlan Krumholz: Yeah. It’s just an imprinting that occurs on you very early on in this country. So, all right, let’s get to something maybe more serious. Howie, what’s inspires you or keeps you up at night?

Howard Forman: So, we’ve talked about this before. And I’m going to try to make this as nonpolitical as possible. But I am struck by how much misinformation seems to pay off and how much platforms play an active role in supporting this misinformation. And I remain at a loss to offer easy solutions. Two examples recently. One is Mehmet Oz, who was a well-known and very well-respected cardiothoracic surgeon and academic in New York, running now for Senate in Pennsylvania. He became a TV celebrity over 25 years ago and has appeared regularly on TV for well more than the past decade, but he’s also supported a lot of very marginal products, and most recently was a huge proponent of hydroxychloroquine, promoting this on Fox News more than 25 times by report. As you know, hydroxychloroquine is no longer authorized for use in COVID due to lack of evidence of any benefit, but his entire candidacy is premised on how Washington got the entirety of the pandemic wrong, which is not a difficult game to play with the benefit of hindsight.

And I think we just reward this behavior, and we have no incentives for people who are just honest truth-tellers. And another example of this is Neil Young, the singer, who’s now threatening to leave the streaming service Spotify if they continue to support Joe Rogan, who is a very influential, successful talk show host, who’s also a great showman but who has continued to support unproven treatments and avoided support for vaccines. It would not be overstating things to say that his podcast and his support influences behavior that causes actual harm. Again, his behavior, this activity, is highly, highly profitable. We have strong First Amendment protections in this country, but we also have the ability to push back through these commercial entities. And I’m not sure we’re doing enough in this regard to stop misinformation or counter it in some way.

Harlan Krumholz: Yeah, I think those are such good points. And I think there’s no question that many of these individuals actually caused harm. I don’t know if you saw DeSantis fighting the decision by the FDA to pull off the emergency authorization for the two monoclonal antibodies that no longer work against Omicron. And again, another anti-science... I don’t know what his endgame is here on the... He’s anti-vax, but now he’s pro- these medicines that no longer have benefit. I just don’t understand.

Howard Forman: And the manufacturers—the manufacturers—have said they have no benefit. The FDA did absolutely the right thing. And the FDA doesn’t even have a political appointed head right now, so you have the exact same FDA that you had under the Trump administration, but now he’s making this, the Biden administration making this... And I just think, take the politics out of this. Let our very smart public health infrastructure make decisions, give us the right guidance, and do it based on facts. It really was frustrating. And in fact, that was my first thought of what to talk about this week. And I decided that I wanted to do something slightly less directly related to health, but I couldn’t agree with you more. It was very frustrating.

Harlan Krumholz: It just sends a message to everyone else: “Don’t trust.” And it’s a problem. But meanwhile, I’m sure it’ll help with fundraising.

So 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, you can find this on Twitter.

Harlan Krumholz: I’m at H-M-K-Y-A-L-E. That’s H-M-K Yale.

Howard Forman: And I’m @thehowie. That’s at T-H-E-H-O-W-I-E.

Harlan Krumholz: Health & Veritas is produced with the Yale School of Management. Thanks to our researcher Sherrie Wang and to our producer Miranda Shafer. Talk to you soon, Howie.

Howard Forman: Thanks very much, Harlan. Talk to you soon.