DAVID HSU: Why do you think medical humanities is important in today’s world?

STEVEN FIELD: I think it’s important because it’s a way of getting back to the heart and soul of clinical medicine, or at least, I hope it is. I was in practice for 35 years, and I think that medicine has moved towards a different concept than the concept that I grew up in professionally. I like the idea of well-rounded physicians. I think people should know things other than just medicine. Reading novels gives you an appreciation for the way that people interact, not necessarily just in medical illness, but also outside of illness, which then you can extrapolate back [from].

But I admit I’m biased. I was a liberal arts major in college. I started in English, and my degree is in history. What was your area?

I did a double major in biology and history. Most of my classes were 20th Century American history.

My senior essay was on Puritan and colonial town planning theorems in New England and the middle Atlantic states, nothing I’ve used ever since. And my junior essay was on witchcraft.

Witchcraft is a little bit closer to medicine.

True. I actually was looking at the sociopolitical ramifications of witchcraft in Tudor-Stuart England and France under Richelieu. So, while it wasn’t wars and treaties history, more social/cultural history, it was history nonetheless.

I come from that liberal arts background, so I have a leaning towards medical humanities. I think it’s really helpful to ground people who are in the field, and I think it’s an often incredibly helpful way to relate to patients on so many levels. You might not be amazed, but many people would be, to know how many times the doctor-patient relationship is either forged or strengthened over a shared interest, literary or otherwise. I don’t mean sharing at the same time, but something that somebody else has read, or a movie, or a play you’ve seen. The reason I think medical humanities has assumed more importance is because the period of time that doctors have to spend with patients in the encounter has gotten smaller and smaller. There’s this thing that in some offices a new patient visit should take 20 minutes and follow-ups should take seven minutes. I retired from practice in 2011, and I would never be able to function under this system now, because I’m a schmoozer, you know? I like to talk to patients.

And you’re a gastroenterologist, is that right?

I am a gastroenterologist, although I had a large proportion of my practice in general internal medicine. Along the way, I also got a certificate in psychodynamic psychotherapy, which I found very useful, not only in the practice of medicine — mind and body are linked, of course — but in two other places as well. I had a small psychotherapy practice, in addition to my medical practice, so it clearly helped there. And I work in clinical ethics now, and understanding family dynamics is really helpful when you are dealing with patients and families in conflict. I think that psychiatry especially — not so much psychopharmacology, but psychotherapy — is kind of the closest to medical humanities, in some ways.

That’s interesting. I read your bio and it talked about dynamic psychotherapy, but I didn’t know what that meant. I didn’t realize it refers to inter-family dynamics.

Psychodynamic refers to treatment basically anchored in Freudian theory. So it’s not cognitive behavioral therapy. It’s the old standard, you know? You talk about childhood, ego, super ego, all that stuff.

So you see that medical appointments are getting shorter and shorter, and there’s more and more use of technology, and like you’ve mentioned, the humanities could be a bit of a buffer against that. It would help us navigate that world. Can you be a bit more specific on how you see that relationship unfolding?

Just to be clear, it’s not really a buffer against technology per se, but rather, against the depersonalization of medicine that can result from increased technology and decreased time. I’ll tell you the truth. It’s tough for me to answer that question, because I’ve never functioned in this 20-minute visit environment, right? When I was last in practice, a new patient got an hour and a follow-up got a half an hour. That’s much harder to do today. So there was time to talk to them and sort of develop the relationship – the medical side as well as the interpersonal side.

I think that it’s a good question. I think medical humanities could have two different functions. It hopefully heightens physician sensitivity to the human condition, to what patients are feeling and going through. In addition, I believe that for many physicians it acts as a counterweight to the immersion in medicine and illness, and as a source of personal fulfillment. Of course, that second sense may not be true for everyone; people find fulfillment in life in many different ways.

Let’s talk a bit more about the tie-in with psychiatry because I’m really curious about this. You reviewed the book The Third Reich of Dreams. How do dreams and the subconscious relate to medicine?

Freudian theory has gotten a bit of a bad name over the years, and psychiatry has moved very much to psychopharmacology. But psychiatrists classically loved to analyze dreams, because a dream brings in not only what the immediate concerns are, but also all the things that you draw on in your background. So it’s a very interesting way to approach things. For some people. Others don’t dream, or they dream, but they don’t remember them.

And it’s not only dreams. I noticed many times in patient interactions in my medical practice, that people re-enact things from their childhood or early adulthood. Their mother didn’t love them, so they choose somebody who reminds them of their mother, because they think they’re going to fix it this time. That’s almost a cliche. But that sort of stuff happens a lot, and I think that’s really interesting.

I had sort of a subspecialty in inflammatory bowel disease, so a lot of Crohn’s and ulcerative colitis patients. And I had one young woman, not so young actually, who had very severe Crohn’s, and she wasn’t getting that much better. And I talked to her about putting her in the hospital and putting her on TPN (total parenteral nutrition) because she was losing so much weight, and she didn’t want to do that. And she said “I don’t want to go to the hospital. I’ll try, Dr Field. I’ll really try, because I’m telling you, I really don’t want to gain any more weight.” And then she said “I mean, I don’t want to lose any more weight.” And I just said, ”Well, that’s an interesting slip, right? What do you think that’s about?” And she paused, then she burst into tears. And then I got the whole story about her difficult relationship with her mother, and how her mother was always making nasty comments about her weight. This was all coming out; there was a whole huge story behind it. And there’s stories behind lots of people’s stuff, and I’m not saying her Crohn’s was due to that, not at all, but there are lots of patients who have this kind of thing in their background. You know, life story and narrative, and so that’s what I think Medical Humanities is about, the human narrative behind the patient and their illness. I think having some knowledge and experience, some background, that isn’t just medical but also is humanities-oriented can sometimes give you common ground with patients, or even just make you curious about them. All it took was saying, “that’s an interesting slip. What do you think about that?” And it was a whole other side of this patient. Medicine is about people, and people are not just their disease. They’re people with a disease. Sometimes you have to have that sort of global look. And I think the interaction with the humanities is helpful in that regard.

What’s your Gestalt sense of the relationship between our mental well-being and physical illness?

I have always felt that the two things influence each other, and it’s not necessarily a sharp line between them. I would certainly not go so far as to say that my patient’s experience with her mother caused her Crohn’s disease, but I think psychological states can certainly exacerbate symptoms. I mean, the gut, specifically, has its own extensive immune system. It has its own nervous system, responsive to inputs from the central nervous system, and the enteric nervous and immune systems are interrelated. And much of that has been well worked out, there’s this whole field of neurogastroenterology that deals with this.

So I think that’s recognized, clearly, that one’s psychological state can influence illness and sometimes worsen symptomatology. Many times I’ve seen “intractable” symptoms abate when a patient retires from a stressful job, for example. So I think stress has a very significant role in the production of symptomatology and perhaps in the pathophysiology, actually, in certain cases.

How about today? In 2025, it seems like the world of medicine is facing a lot of stress. There’s a lot of vaccine skepticism. People are antagonistic towards public health. COVID certainly didn’t help things. How do you see medical humanities being part of that landscape?

Well, I imagine that landscape is prominent in the United States in large part related to political developments.

I guess I’m influenced by my subscriptions to the New York Times, but Canada is the same. I mean, I feel like before COVID there were a few people that were skeptical of vaccines, but now everyone seems entitled to have an opinion about it and voice it readily. I’ve worked with mostly Chinese patients. I hear this from them all the time, but they’re generally a little bit more “toe the line” regarding what their government says they should do. But I think now people are more emboldened with some of these ideas.

One thing about the United States is that, as opposed to most of the northern European countries and Canada, the US has a very strong libertarian streak. Individuals. “Don’t tell me what to do.” We rebelled against England, settled the frontier, dispossessing everybody who was there in the process. So there’s this real idea of the right to be left alone. So the question is: does that feed the problem?

The reason I have a little question with the role of the humanities is when you look at people who are involved in medical humanities — and this may only be my impression — I think they tend to sort of cluster closer to the left. And more of them are the people who will take vaccines and things like that. But I don’t know that. I wish there were a larger role for medical humanities in smoothing over these political differences and polarization. I think it would be nice if there were. For example, people talk about book clubs and reading groups. I’m a big believer in them, and they’re very popular, but most of the time, book clubs are self-assorting entities, right? Go with people in your club. The people in your reading group are often people who probably feel somewhat the way you do. It would be great to have reading groups with multiple viewpoints represented, as long as their discussions don’t devolve into chaos. These days, that’s a real risk. A big problem in America is that we’re becoming more and more polarized.

The trick is to bridge that divide somehow.

A big problem is that in so many cases, there is no trust. When everyone has their own facts, it’s the end of the idea of an absolute truth. Each side has its own truth. You have your facts; I have my facts.

I guess, as a historian, we are taught gradually that truth is kind of like that, right? One thing I remember learning in university is this idea that facts can be a subjective experience for people.

That’s true. The subjective interpretation will vary and can color the way history is written. And history is written by the victors, right? But facts are facts.

Given that that’s the landscape, what would you like to see MedHum evolve into over time?

Well, It was set up originally as a Medical Humanities Resource. That is, it originally came out of the Literature, Arts and Medicine database, right? So I still like to look at it as a resource. But I’d also like it to be a place where people go for well-written and insightful writing, commenting on aspects of the interface of health, wellness, current events, and literature and the arts. I think it should exist, as the mission statement indicates, at the nexus of medicine and the wider society, and comment on the interactions there. MedHum is brand new, so you have to see how it develops. I’d like it to be a source of good writing, good insightful and perhaps incisive commentary.

I was going to ask you about what you thought about the relationship of technology in medicine. A lot of the time when people talk about humanities and the liberal arts education — like history and English majors — one thing they don’t spend a lot of time on is cutting edge technology. A lot of these studies go back to things that occurred decades ago. But medical humanities is a little bit different, because it wrestles with these things that are happening right now. There’s a certain degree of urgency. And in medicine, new things are coming out every couple of years. As soon as AI comes out, we adopt it for some medical purpose. So we’re constantly trying to push that boundary. Where do you see that going as a person with a humanities background?

One of the things about all the technology is it’s very important to ask the questions about what you’re going to do with the technology. Where it’s going to go, how we can protect things like privacy and vulnerable people. I mean, bioethics has a lot to say about technology like AI and big data and privacy. It also has a huge amount to say about other technologies, like reproductive technologies, transplantation, and the like. But I think you’re talking about two different things. The time-honored majors in university, English and history, the number of people who are electing to major in these is dropping, while the number of people majoring in the STEM fields is rising. So that’s a process that’s happening, and it’s going to continue to happen, just because that’s where things are going. I think that a role for medical humanities in that mix is that of humanizing the processes which technology facilitates and also asking important questions about technology. In terms of AI, since you brought it up, what does it mean to be human? As the machines get better and better, and given that we often use cognition as an indicator of life — ‘sentient beings” — where then is the line? When you can get psychotherapy from a chat bot what does it actually say about interpersonal interaction, what does it actually mean to interact as a human being? Where does this logically end up? No one knows. So I think thinking and writing from a humanities point of view about technology brings a new perspective to the subject. It may be the best way to contextualize our progress and at the same time create guardrails where needed. Because they will be needed.

And there’s just been so much in the news about the use of AI to write fiction. To write college essays. When a chatbot is creating, can it be said to have an imagination? To employ metaphor, or allegory, or irony? And ultimately, how will technology limit our adeptness with basic human interaction? There’s lots of dystopian fiction written about this kind of thing.

If AI continues to evolve and people start to use it as doctors, where do you see a medical encounter in the future? What does it turn into? What does it look like?

There are studies that show that AI is comparable to or better than most radiologists looking for breast lesions. And there’s lots and lots of ways that AI can help in medicine, including increasing diagnostic accuracy across a number of areas, screening potential drug candidates, personalizing treatment plans, and the like. Interestingly, there is a suggestion that the use of AI-assisted technology may lead to a subtle loss of the physician’s native ability to evaluate, what is referred to as “de-skilling.” An interesting and sobering thought. Overall, though, I think AI can be a huge help in medicine, with its potential only beginning to be appreciated. But I would hope that AI would never replace doctors, because AI can’t empathize, can’t engage in a meaningful relationship with a patient, even if it can create the words. I, for one, would always know that it was a machine interacting with me, and that would color my response.

For diagnostic purposes, it will weigh the relative possibilities, but some of that diagnostic process — especially in terms of general medicine — is intuition. There are some areas where AI is less helpful. AI can screen data and suggest diagnoses and investigations, but sometimes patients would come in, and the doctor will think “something just doesn’t smell right here. There’s something not hanging together about this” or “this is somebody who doesn’t normally complain, and now they’re complaining, and that’s different. What’s going on here now?” AI may, may evolve to be able to catch up to that too, because my understanding is that it’s just becoming better and better. But it’s certainly a useful adjunct. I know in our medical school curriculum there’s a whole session on how to engage with AI and how to use it. And I think that’s good. It’s a tool, and it’s really helpful.

One more change of gears. How did you go from the liberal arts background into medical school? Was there a transition, or was that something you always wanted to do? Or was the liberal arts a bit of a detour? How did that evolve?

I always wanted to be a doctor, but I also always knew that I wasn’t going to spend four years at a college that was very strong in liberal arts and spend it doing biology or some other concentration in the sciences. There were just too many other things that I liked. I had a bunch of AP credits coming out of high school, so I didn’t have to take many science courses — and I didn’t — but I took enough, and the rest of the time it was English, history and other humanities courses. I thought that was important before I went to medical school. And I generally think that it’s important.

Where did you get that idea as a 17 or 18-year-old?

Probably simply from the fact that I was too interested in so many things. I was fascinated by medicine, but I always read a lot, and I was much more attracted to humanities in college, knowing that I was going to go to medical school afterwards. I knew I’d be spending the rest of my professional life in medicine, so I wanted to explore non-medical areas in college.

When you went into medicine, did you think that you were leaving the humanities part behind, or did you always think the two would stay entwined?

I always thought the two would stay entwined. At one point I actually thought of doing psychiatry — as I said earlier, that always seemed to me to be the specialty most intertwined with the humanities — but I decided not to. But no, I didn’t leave the humanities behind.

One thing I’ve always appreciated about the United States is their undergraduate education is much more permissive of people pursuing other things and then going to medical school later. In other countries, like in Canada, undergraduate learning is very much more pre-defined. If you want to become a doctor, you have to do life science, and life science leads into medicine. It’s technically not written anywhere, but everyone does it this way, and I think you miss out on a lot of stuff that you could learn that might help you later, but in a more abstract way.

I think a four-year general undergraduate curriculum can certainly broaden your horizons. Medical school was four years of really hard work; College was the last time, at least for the next four years, that I could do something else in depth with the other side of my brain.

Or even if we just say those four years exist for themselves. It’s a great four years. It doesn’t matter if it affects you later, necessarily. We could die tomorrow. You enjoyed your college years. Let’s circle back. Why is medical humanities important in today’s world?

I feel like medical humanities is important because I just think it makes us broader and deeper and hopefully more empathic human beings. And that’s always a good thing, and I think patients benefit from that. I hear a lot of complaints from family and friends about medical care these days (because let’s face it, I’m at the age where my contemporaries all talk about their medical care) and often their biggest complaint is that the doctor’s visit was very short or they felt rushed. Unfortunately, a number of people are unhappy with the nature of doctor-patient interactions these days. But I don’t know that the humanities alone are going to make that better. So much of it is driven by insurance companies, reimbursements, and documentation needs — all things that are beyond our control.

Thank you very much for your time.

Web photo by Medhum.

Posts Written by Dr. Steven Field

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The Expendable Man by Dorothy B. Hughes 

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The Great Influenza by John Barry 

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The Winter Soldier by Daniel Mason

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The Eye in the Door by Pat Barker 

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Frimbo is an admirable erudite, reminiscent of Sherlock Holmes, while the “closed room” scenario with a handful of characters evokes Agatha Christie. The writing is accessible, the rendering of Harlem accents remarkable, and the accurate references to state-of-the art forensic medicine, using anatomy and chemistry, are engaging. The conversations between Archer and Frimbo explore the nature of science, faith, and psychology. 

Some passages contain philosophical observations: ‘Pure faith in anything is mysticism. Our very faith in reason is a kind of mysticism’ (p. 214).  
 
Fisher was an African-American physician-author whose clever novel contains only African-American characters, including the physician and the detective. Specialized in radiology, he lived most of his life in Harlem, but he had studied medicine at Howard University. The author of many short stories and plays, he was also a gifted musician and composer. He at died at the age of 37 from an abdominal cancer attributed to his work with X-Rays.   

The Conjure-Man Dies: A Mystery Tale of Dark Harlem
Rudolph Fisher  

Miscellaneous Original edition 1932  
Publisher University of Michigan Press 
Place Published Ann Arbor MI 
Edition 1992 
Page Count 316 

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.   
Web image by Salah Ait Mokhtar 

Lucy
Felice, first of all, can you talk a little about your background, what you were doing professionally just before and during the time you did the Database?

Felice
I was on the faculty at NYU School of Medicine. I was trained with a PhD in physiology, was hired as a physiologist, and I taught medical students physiology, but most of my life. I’ve had this dual interest in literature and in biology. And in fact, that’s from high school on, and when I started college, I had to make a decision about whether to major in English or in biology. And I decided to major in biology because I thought, well, I can do literature on my own any day, and I’ll never be able to make it a profession. Whereas, you know, I can’t do science on my own, I have to be trained. And so that was the path I took, which was a science path, but I never lost my interest in reading and thinking about literary things. And let’s see, at one point I decided to start a discussion group with the medical students and any faculty who were interested. It was a small group, and it changed from year to year, but we met once a month, and I would, initially, pick out readings. They were short readings because students don’t have much time to read non-medical stuff– poetry, short stories, essays, and that continued for several years. At the same time, and really, I have to say that without my husband’s help and interest in what I was doing none of this would have happened because he of course, was interested in the use of technology, computers in medical education, but he was also interested in what I was doing with my literary stuff. So he set up a database for me on my own computer.

Lucy
And this was in the early 1990s.

Felice 
Yes, 1993 or thereabouts; he set up a computer program for me so that I could keep track of the readings that I was doing with the students, because I didn’t want to repeat anything with the same group, essentially. And I also was kind of following the work of Joanne Trautman Banks, who was a pioneer. She really was the one who started the field. I have to give her full credit. In 1978 she published a book of annotations of literature that had to do with medicine. I don’t really remember how I found it, but it was very helpful in my own work with the students. I decided, basically, to copy what she did, with some modifications of my own, in my own database that my husband Marty Nachbar helped me to set up. So to begin with, that’s what we did. Marty’s idea was that I should recruit other people in the field who were doing this kind of teaching with their students, and who might be interested in submitting annotations to this database. And secondly, that we should make it online, so that anybody out there who has access to the internet could stumble on this thing and maybe get interested. And the idea, his idea, was that it might expand the whole field, which was, at that time, just literature and medicine.

Lucy 
I had the privilege of knowing your husband and saw how he was really ahead of his field.

Felice 
He was a visionary. Definitely not just with that, but with all kinds of stuff that had to do with tech. You know, computers in medical education.

Lucy 
He was a big help to me when I had a grant from the NIH to do a project. He really zeroed in on its strengths, its weaknesses, and helped me in a very generous way. Just to backtrack a little bit, how did you choose the work that you shared with the students? What were you looking for when you selected certain work?

Felice 
I really had a pretty broad range of what I chose, and how I looked for it. Of course, if it was something to do with doctor or resident or medical student experience with patients– that was what I was looking for. But then there was patient experience, also from the patient’s perspective, how they were interacting, and what their feelings were about their illness or disabilities. And then as I started getting interested in this, I decided I really needed more training, and I decided to get a master’s degree, not in literature, but in something that was called at that point, humanities and social thought– that was the track at NYU in one of their master’s programs. And through that, I got really interested in the social thought part and societal issues that directly or indirectly affected medical practice, patient experience, and so forth. So that really also was important for me to get that degree, because when I started recruiting other faculty from other institutions, they [thought] I was an imposter. I was coming into that field without any background other than my interest in it. And they did not think highly of my intrusion into their field, and I don’t blame them. But you know, when they got to know me and what I was doing, they sort of became more accepting. But the thing that really clinched it was when I started this degree program, because then they felt okay, she’s serious. She’s going to get some professional training that makes it more legitimate to be associated with her. But of course, it was a really great thing for me, because it did give me a lot more background for what I was doing and what I would like to have been doing.

Lucy
You were very successful in recruiting a national board of editors.

Felice
Yes–the contributors were from all different places. They were very interested in making this a national internet-based project, because they were interested in furthering the field, and they saw the potential if it was on the internet, But initially I also had two NYU medical students who helped me choose material and write annotations. And then the site, especially once it became web based, was heavily used by so many and got so many hits–about a million a year. 

Lucy
It’s clear that the users went beyond medical students and physicians. What do you think attracted the wider audience?

Felice 
Well, I would occasionally get some notes, you know– I think there was a mechanism– I don’t remember exactly, where a user could contact me or somebody who was paying attention at NYU. What I found really interesting was there were patients who were using it. I don’t know what percentage of the users were patients, but there were patients who found stuff that was helpful to what they were going through. And so that was interesting to me, and I thought it was important, you know, it wasn’t my original intent to reach out to patients. It was really more of an education-based thing, but there it was. And why not?

Lucy 
We’re all patients at some point in our lives.

Felice 
Yes, right. That’s exactly true– issues about death and dying, not necessarily for the individual person, user, but family of theirs, friends who were in serious medical situations–all of that, it makes, made sense. So the audience became very broad.

Lucy 
And also you expanded the format.

Felice 
Well, first of all, when we started in 1993 there wasn’t a worldwide web. It didn’t exist. There was an internet. But the program that allowed people to access the internet was called Gopher, G, O, P, H, E, R. It was much more primitive but that’s what we started with, we put the annotations on this gopher program. Marty’s associate, Roy Smith, was instrumental in helping to set up the gopher program. Roy maintained his interest in our project as it moved forward. Then maybe a year or two later, I don’t know what the time lag was, but when the World Wide Web became available to anybody, I recognized that that would be really important, because it allowed you to make links with hypertext. You could make links between annotations; if you were referring from one thing to another; you could make links to art if you were annotating an art piece. You could make links –that was so key. So the web was just great. That was the way to go. And we were just lucky that it was there pretty early on.

Lucy
You recognized its potential.

Felice
And that wasn’t just Marty, actually. That was me.

Lucy 
And you chose the format of annotation versus a longer review. Was your goal to divide it into summary and commentary, specifically so that people understood what the work was about, but also how it connected to medicine and health? 

Felice 
I was going back to the format, or a slight modification of the book that Joanne Banks published in 1978. I think she used key words and a short paragraph about what the work was about. I think I expanded it to make both a summary and a commentary, because I thought that would be more helpful to people. I was modeling this thing after what she had done in 1978 and then again, she published another version, an updated version, I think, in 1982. In fact she and I had a phone conversation about our respective projects. 

Lucy 
One of the strengths of the web site was open access. You didn’t have to subscribe. That was important to you, I would imagine,

Felice 
Marty was very insistent on that. There were people who said, Oh, you should be charging something or whatever. And he said, No, if you want to make people aware of this field, you just make it completely accessible,

Lucy 
And it stayed that way, and the new site is open access. That leads me to ask, what do you think the role of health humanities is now? 

Felice 
You know, with all this artificial intelligence stuff, –I was reading about, or I saw online, a woman who, instead of having people as friends, she has some kind of an AI setup. And she’s not the only one, apparently, who’s, you know, relying instead of on human contact –on these bots. To me, it’s mind boggling. So I think there is definitely still importance to making this kind of work accessible and promoting it. And I also think it still should be part of medical education, health education, and it should be accessible to anybody who wants it.

Lucy 
Moving on to our new project. It’s based on the database but one of the differences, in my view, is that we’re including reviews that are a little more in depth than the annotations. How do you feel about what’s going on with the new site and how it’s evolved? And you can be honest. I mean, please.

Felice 
I think it is different from the database, and that’s good. It’s fine. You have your own vision of what you’d like to accomplish, and I think it’s working well, you’ve recruited people who’ve written some interesting things, not annotations, but more like essays. And you’ve expanded it so you have included art. I don’t know what else you’re planning to do, but I think it’s a good site, it’s valuable. It’s nice to have something up there that’s medical humanities related. And I really admire what you’ve done. 

Lucy 
Thank you. I think one difference is, you pioneered using links in the old database, and we’re using links much more now that it’s possible to do so. So if we review a book, then the author is interviewed by someone, we might link to the YouTube video. That’s been interesting to do and adds to what we can offer. It’s hard to know who’s using the site. We’re still in the very early stages, but I think it has a fairly broad appeal beyond just practitioners whether they’re doctors, nurses, or trainees, and I’m trying to have the public be interested in the work that we choose.

Felice 
I think you have your vision of the website, and that’s what you’ve voiced here, but it’s not my view of medical humanities.

In fact, I found this online at George Washington University, on their medical humanities site, and they quote me, but they don’t acknowledge that it was me, where I wrote: “Medical Humanities is an interdisciplinary field that includes the humanities, social sciences and the arts and their application to medical education and practice,” and then whatever education materials people develop that are designed “to help students develop and nurture skills of observation, analysis, empathy and self-reflection, skills that are essential for humane medical care.” [Quotes are from the GW website and were at the original NYU medical humanities site.] Especially the first part that I read, I mean that it is a broad, interdisciplinary scholarly field. That is how I have always, or at least for many years, maybe not in the very beginning, looked at it. So that’s a little different from what you are trying to do. And I’m not criticizing you in any way. I mean, I’m just recognizing that there is a difference in what you want to do with your site and what we did with ours.

Lucy 
One of the things that the database could do was show different cultures and describe experiences that the students themselves might not have directly. MedHum is a bridge into other cultures, and that’s what I mean when I say it is a lens on the human experience. That by reading literature, by reading about other societies, and what people who live in those societies go through, which you know only too well, it broadens your ability, hopefully, to empathize and to understand the differences among people.

Thank you, Felice for speaking with me today and for your editorial guidance throughout the years. It’s been an extremely fruitful collaboration.

Web image by Medhum.org

Posts Written by Dr. Felice Aull

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DAVID HSU: What are you up to these days? What are you working on?

JACK COULEHAN: In terms of creativity, I’m working on a new collection of poems that I’m editing now. I’m also the book review editor of The Pharos magazine, and that takes up an unexpectedly large amount of time.

DAVID HSU: Do you practice medicine at all anymore?

JACK COULEHAN: No, actually, I retired about 12 years ago now, but I do still teach medical students as a volunteer. It’s a class that I began back when I started at Stony Brook in 1991. It’s called Medicine in Society, and it’s a first-year seminar course that deals with human, social, and interpersonal issues in medicine. We use a lot of literature and film in that and so I’m still a group leader. We also have a master’s degree program in medical humanities, and I teach a course in that. So I still keep my hand a little bit in teaching.

DAVID HSU: Given that you’re doing all this work in the humanities, what do you think about the relationship between medicine and the humanities?

JACK COULEHAN: You know, that’s a surprisingly difficult question for me, because I’ve always had this kind of love/hate relationship with the term medical humanities, because I think it doesn’t quite capture the problem or the issues that we’re trying to address and what we do. In a lot of my work, I tend to cite a piece that Rafael Campo wrote in JAMA in 2005, entitled “The Medical Humanities, For Lack of a Better Term.”  What I’ve really always thought is that what we’re trying to do is to teach students and ourselves, really, to become more reflective and more thoughtful…[Campo] used the terms reconnection, renewal, and meaning. . I think we’re not necessarily encouraged in our profession to become aware of our own needs, to become reflective, thoughtful, to become focused on the personhood of patients and so on. And so I think, through discussion, through examples in literature, film, etc., we can really try to address these issues. I guess the term medical humanities is fine as a placeholder, but I wish there was a better term for it. But, aside from reflecting on the name itself, those are the things I think we’re trying to address in medical humanities. 

When I started in this business, pretty long ago, I was thinking about [medical humanities] mostly in terms of becoming a better doctor by improving one’s empathic skills and reflecting on the patient as a person. But as time has gone on, I’ve become more aware that I think it’s really something that makes you a better person and also more able to cope with the stresses and the challenges of modern medicine. So, I think it works both ways.

DAVID HSU: What are your criticisms of the way medicine is practiced now, since people aren’t doing all this [reconnection, renewal, and meaning]?

JACK COULEHAN:  First of all, I think medicine has to be understood in our current overall culture of increasing subspecialization and focusing on narrower and narrower fields [of practice], using more and more technological instruments, tools, and machines. Also, medicine is more and more controlled by larger interests that are not necessarily oriented towards the primary values of medicine.  There are virtually no constraints on the use of technology, the focus is entirely on disease, on narrow perspectives on disease.  

What I’m saying is that all this detracts from the ability necessary to see the patient in terms other than as an object that has a disease or a person who has a specific problem that needs to be addressed.

Just to give my personal examples, when you get to be 81 years old, as I am, you have a lot of opportunities to experience being a patient. I saw a cardiologist a couple of weeks ago who is an older cardiologist, and he was what I would call an ideal physician. He does interventional cardiology, he’s a professor, well-published, and yet his approach, I would consider to be very therapeutic–very positive, trusting and good eye contact. He wasn’t looking at the computer. He was just a genuine person, genuinely interested. I’ve also gone to a urologist who was just the reverse. Equally specialized in the same medical system, but one who was all about the particular issue, the particular organ, and the particular thing that’s happening to that organ.

It’s possible, you know, when you start talking about the kind of values and the kind of stresses that modern physicians are under, the first response you get is that, “Oh, yeah, that’s great. That’s what we should do.”  But you know, we only have 15 minutes [and] we have to deal with the EMR, etc. But that belies the fact that there are physicians out there who are very good at actual doctoring and others who aren’t, and I think that’s because, well, let’s say, look at those two things on a spectrum…I would say that there is the opportunity, even in today’s world, to help students keep their belief, which most of them have, I think, when they begin, that doctoring is really interested in persons. And I think we could increase the percentage of physicians who feel that way and practice that way.

DAVID HSU: I’m curious because you mentioned that you’re 81. You’ve been around the medical system for decades. How has the system changed from when you first started in it until now? Is it getting worse, or has it always been like this?

JACK COULEHAN: Well, that’s tough. I definitely think it’s worse, but I also think it’s romanticism, you know, to look back and say, “Oh the good old days.” 

I graduated from medical school in 1969 and graduated from my residency and fellowship in 1975. Those were the days when I was learning to take a history. Taking a history–that’s another phrase that I dislike. But we had a little black book, that had 100 or 140 questions to ask in it. There was no concept of medical interviewing, nor the  teaching of it. I had the feeling that a lot of the values of good doctoring were kind of implicit and not necessarily taught in those days.

And so we’ve gone through a whole phase of learning that the medical interview is a therapeutic tool, and now I think we pay a lot of lip service [to it], but I don’t know that we necessarily carry it from its place in the curriculum to its place in the clinic or the hospital.

But there’s no question that it’s gotten worse [although] the technological advances are just so incredible. I remember at some point, as a student, you have this idea that the CT scan will give the answer, or the lab result will give the answer. The patient’s story is secondary. And I remember some instructors saying, no, no, wait a minute, you should know 80% of the time what the answer is before you even request the test. The test is not meant to be, the be-all, end-all of everything, but, definitely, that is the case now. Even within practice, every advancement that happens in technology kind of nudges us closer to thinking of the computer as a solution for everything.

Let’s say, one patient comes in with chest pain or nausea. I think the tendency now is to focus on those symptoms, to think of what disease might cause them, and to do various tests, rather than sitting down with the patient and trying to understand what their situation is.

DAVID HSU: You mentioned this earlier, and I wanted to follow up on this little comment you made about how the practice of humanities and writing has a self-care component to it, and that as you’ve practiced it more, it’s helped you handle stress and different challenges. Can you elaborate a bit about this?

JACK COULEHAN: As a high school, college, and even a medical student, I had this inexplicable urge to write poetry, which I did. It’s pretty juvenile. But anyhow, I did it. Then of course, I gave it up because I was a doctor. I was practicing, I was doing research, etc. And in my mid-40s, I was reaching, I think, what you might call burnout. That might be a little too dramatic, but I felt that there was something missing in my life, in my career, and I happened to have a patient who was a professor of poetry at the University of Pittsburgh, where I was teaching at the time. And one thing led to another, and she encouraged me to start writing again. And I did, and I found very quickly that by writing about…my experiences in medicine, I was able to…work through them and understand my reactions better, and so I think that poetry is a reflective practice that in a sense provides occasion for you to grapple with experiences, issues that have been troubling you, or that on the other hand have been very happy. It can work both ways.

Getting back to medical humanities, I think what we’re trying to do in medical humanities is to stimulate that kind of process in young physicians or young clinicians, whether it’s through poetry, through writing journals, through just meeting in small groups…that kind of thing…and to use not only personal experiences, but literature, poetry, film, etc. as stimuli for that.

DAVID HSU: Let’s wrap up with what you would like to see medhum.org do? How would you like to see it grow in the months and years to come? What type of topics or articles do you want us to tackle? 

JACK COULEHAN: I like the concept of being provocative. I’d like to encourage people to come in through material that’s kind of leading edge. I’d like to see people have conversations, comments and so on.

DAVID HSU: Thank you, Jack for participating in “Meet the MedHum Editors.”   It’s been a pleasure to speak with you.

Written by Jack Coulehan on Medhum.org (View All)

Alphonse Daudet and Intractable Pain

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Children Who Remember Former Lives 

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Directed by Anne Kauffman, the play features “Primes,” or holographic simulations of the dead intended for therapeutic use by the living. June Squibb—who, at 96, is making history as the oldest performer to open a Broadway show—astonishes as Marjorie, an impish 85-year-old with dementia using a much younger version of her husband Walter (an uncanny yet tender Christopher Lowell) to regain and retain her memory. Marjorie’s daughter Tess (the incredible Cynthia Nixon) is skeptical and fearful of the technology, whereas Tess’s husband Jon, played by a standout Danny Burstein, is a fan—until an on-the-nose change of heart in the penultimate scene. 

Marjorie Prime’s central flaw is that it favors concepts over dramatic depth. The characters are well-acted but underdeveloped, and almost all they do is talk; the biggest event may be Marjorie urinating herself. Yet, despite its slow pace and formulaic structure, Marjorie Prime is intelligent and poignant. 

Marjorie’s memories are embellished and sanitized for her comfort and convenience. The fallibility of memory is hardly a novel concept, but the Primes enable this reconstructive process and also become a stand-in for genuine connection in the wake of grief, preventing the family from confronting painful realities and repairing their relationships.  

By the time the truth fully surfaces in the unsettling final scene, which makes adroit use of a stage turntable (props to scenic designer Lee Jellinek), there are no humans left to heal. When storytelling is delegated to AI, truth becomes archival rather than relational; however, truth must be witnessed between living people in order to be ethically and therapeutically meaningful.  

Playwright Jordan Harrison’s Primes, like flesh-and-blood clinicians, absorb and co-construct patients’ accounts of self, yet they are disembodied, unfeeling, and ultimately unable to act with compassion, turning dynamic stories into datasets.   

Marjorie Prime, through Feb. 15 at the Helen Hayes Theater in New York; 2st.com/shows/marjorie-prime.  

“Much of healthcare happens in interpersonal moments,” write Maura Spiegel and Danielle Spencer in the first chapter of The Principles and Practice of Narrative Medicine—and machines are good at many things, but participating in a truly interpersonal moment is likely not one of them. Several studies have suggested that models perform worse for underrepresented groups because they are trained on datasets that lack racial, cultural, and linguistic diversity. Additionally, AI may miss subtle emotional cues and fail to interpret tone, context, and metaphors, which, one bioethicist [1] predicts, could “fundamentally alter” how trust is practiced in healthcare. Others [2] have underscored that “AI should be viewed not as a replacement for the physician, but as a partner in delivering empathetic, patient-centered care.” 

However, AI is not wholly bad. For example, a recent systematic review [3] found that applying natural language processing (NLP) to unstructured text in electronic health records (EHRs) can detect signs of cognitive impairment. Some [4] have found solace in text-based simulations with lost loved ones. And perhaps technology should be viewed as a vehicle for strengthening partnerships between clinicians and patients. Designed by Gabriela Gomes, the video game Healing Spaces aims to help those with neurodegenerative diseases connect with their caregivers. It is a multisensory experience: an app with beach and forest scenes, and a box with aromatherapy that smells like pine trees. Healing Spaces may evoke memories or even create new ones between caregiver and patient, unlike the Primes’ hollow curation. 

Healing Spaces also includes sunscreen-scented lotion that caregivers can use to massage the hands of those in their care. Needless to say, holograms and lotion don’t pair well. “You can’t touch a hologram. So there’s something about them looking so much like your loved ones, but not being able to quite achieve intimacy with them,” said Harrison during Marjorie Prime’s Off-Broadway run about a decade ago. “The loneliness can never be quite extinguished, never satisfied, because they’re just pixels.”  

[1] Kerasidou, Angeliki. “Artificial Intelligence and the Ongoing Need for Empathy,  Compassion and Trust in Healthcare.” Bulletin of the World Health Organization, vol. 98, no. 4, 2020, pp. 245-250. pmc.ncbi.nlm.nih.gov/articles/PMC7133472/. 

[2] Ghenimi, Nadirah, et al. “Integrating AI with Narrative-Based Medicine: Enhancing Patient-Centered Care in Primary Practice.” Perspectives in Primary Care, 5 Dec. 2024, info.primarycare.hms.harvard.edu/perspectives/articles/integrating-ai-with-narrative-based-medicine.  

[3] Shankar, Ravi et al. “Natural Language Processing of Electronic Health Records for Early Detection of Cognitive Decline: A Systematic Review.”npj Digital Medicine, vol. 8, no. 1, 2025, p. 133. pubmed.ncbi.nlm.nih.gov/40025194/. 

[4] Fagone, Jason. “The Jessica Simulation: Love and Loss in the Age of A.I.” The San Francisco Chronicle, 23 July 2021, sfchronicle.com/projects/2021/jessica-simulation-artificial-intelligence/. 

Web image from 2nd Street Theater.

I am glad to report that Playground is a success on this count. In this most recent novel, Powers turns to the ocean as a backdrop for his story. He weaves together the narratives of three main characters. Todd Keane, who is the son of a successful businessman, grows up privileged in upper-crust Chicago. As a high school student in a top-tier private school in the 1970s, he is captivated by the relatively crude computers of the time, mounts the technology wave and feverishly rides it to professional success as an adult. Evie Beaulieu is literally and figuratively thrown into the water at a young age by her father, a deep sea explorer, and becomes obsessed with everything watery. She is more comfortable swimming deep beneath the ocean surface than walking on land. With the support of a gentle and self-effacing husband, she becomes a world famous oceanographer who achieves renown because of her ability to convey the magic and mystery of the ocean equally well to her scientific colleagues and young adult readers, echoes of Richard Powers himself. Finally, Ina Aroita grew up on the Pacific island, Makatea, but moved to the United States to pursue studies in the creative arts and becomes a sculptor. In college, she meets Todd and through him she is introduced to an important fourth character, Rafi Young, who pulls together the Keane-Aroita story lines.

Rafi grew up in the Black neighborhoods of South Side Chicago. He is a voracious reader from the first day of school and, defying the odds,  wins a scholarship to attend the same high school as Todd Keane. They meet over intense games of chess, advance to the ancient addictive game of Go, and develop a powerful but vulnerable friendship. They both choose to go to college at the University of Illinois, and Ina is drawn into their orbit.  Powers pulls all of these characters into a tight web that centers on the ambitious plan of an American company  to build a self-sustaining city that will launched from Makatea and will be submerged under the surface of the water. The residents of the island are being asked to weigh the pros and cons of the “seasteading” initiative and decide whether to approve it. The rationale offered by the proponents is that life in such a unique environment will enable the occupants of the submerged city to live in a realm outside the jurisdiction of any company and be free to pursue their intellectual pursuits and dreams about expanding the use of artificial intelligence, free of government interference and restrictions.

Extreme libertarianism meets AI wonderland.

Powers populates his literary world with characters we come to know well and grow attached to. It is a strength of Playground that they are believable and not simply spokespeople for a point of view. Powers explores many themes in this book. Games, those that people play casually for leisure, like chess, and those that they play intensely for success in life figure prominently in the novel. Todd and Rafi’s obsession with the ancient board game of Go, with its infinite number of possible outcomes branching out from a simple 19×19 linear grid, becomes an incubator for their ideas about computing capacity. Go provides an alluring framework to explore human behavior and model it for use by programmers of life-like computer surrogates. The game provides the initial inspiration for Todd to design powerful AI systems that can mimic humans and beat them at their own games. There is an appreciation of the growing potential for unpredictable outcomes as computer systems become more complex, machine learning diversifies, and neural networks become denser. The example that most impresses Keane (and Powers) involves the game of AlphaGo, an actual computer program, which was designed to play Go at championship level. Todd recounts his feelings of awe when the program  made an inexplicable move in a game against Ke Jie, the number one ranked player in the world at the time, that sealed the computer’s victory in a three-game match. This was something that was thought to be beyond the power of any computer (this same episode features prominently in the book Maniac by Benjamin Labatut).

In this novel, the inventiveness of nature and the unpredictability of human interactions far surpasses anything that AI accomplishes. The complexity of the natural world, its wondrous diversity, its unexpected vitality, is captured in incandescent prose as Powers describes the glowing colors of the deep-sea creatures. Can and will computers achieve a sense of stewardship and legacy? Will they develop an attachment to the environment around them and struggle to sustain it and pass it on whole to the next generation of computers in the same way that links people across and with future generations?

The novel reaches a climax and the ending involves an unexpected plot twist. The book is too much of a fun read for me to reveal it and spoil it for you. One hint — keep in mind that Todd Keane is an extraordinarily complex person. That said, what is striking is how marginally AI actually influences the actual outcome of the novel. It is more of a gadget play than an active player in the narrative. It is as if Powers himself is unsure how AI will impact those of us alive today and the generations that will come after us. If this is true for Powers, then it suggests that all of us should stay modest in our predictions of the future of AI. Reading Playground, I think he would remind us to keep in mind that however things turn out with AI, it will probably work out best if we remember the grandeur of nature and the human capacity to care deeply for one another and our environment, qualities that Powers describes with an expansive intelligence and poetic beauty.

Playground
Richard Powers
W. W. Norton & Co.2024.
381 pp (paperback)

Web image by Medhum.org

Literature mirrors the general culture. There has been a recent explosion of books in which AI is the central plot device moving the narrative forward to endings that range from a utopian fulfillment of human destiny to the catastrophic collapse of civilization and the annihilation of humankind. But AI infiltrated the literary space several decades ago. Philip Dick imagined a world in Do Androids Dream of Electric Sheep? where cyborgs were being hunted down because of fear that they might take over the world. In 2001: A Space Odyssey by Arthur C. Clarke, a robot named Hal murders nearly all the crew of a spaceship on a planetary mission because of a programming error. 

Speak by Louisa Hall is more recent addition to the AI library. But it was published several years before large language models became a routine tool to plan a vacation or write a letter of recommendation. Is it still worth reading in 2025? 

The novel is a composite narrative centered around five interwoven stories spanning the time period from 1663 to 2040. In the first narrative, a young Puritan girl who finds herself in an unwanted marriage, records her thoughts in a diary that she is writing on a treacherous ocean voyage to America. Fast forward to the 20^th century and we meet Alan Turing who is writing letters to the mother of young man to whom he was emotionally attached and who died prematurely. He is troubled by his inability at times to communicate with people. A decade later we meet Karl and Ruth Dettman, a couple whose families escaped Nazi Germany but under vastly different circumstances. The husband, Karl, is a computer scientist who has developed a program named MARY to enable computers to interact with humans. Ruth, his wife, is a historian who has built a career centered on the publication of old diaries like the one written by the young woman traveling to America. She is trying to convince Karl to expand the memory of his computer program and enrich it with more human material, but Karl stubbornly refuses because he is concerned about the power of his program to overwhelm its users if its database is expanded. Finally, we jump ahead to 2040, and we read the transcripts of the trial of Stephen Chinn, a man who is being prosecuted for the production of robots that are too life-like. Chinn is being accused of causing physical and psychological harm to the people who have used his robots and of weakening normal relationships between people. A young adolescent named Gaby, who was given a doll powered by a version of MARY, is one of his alleged victims. His own personal recollections are folded into the trial proceedings, as he tries to describe his intentions, justify his actions, and make amends for where they may have gone awry. 

Taking stock of our world today, there is clear evidence that AI can improve the day-to-day lot of people, make life more convenient and efficient, and promote better health outcomes. However, much of the current angst that permeates discussions of AI is focused on the potential economic and sociopolitical consequences. There is fear that systematic adoption of AI will lead to widespread loss of jobs and financial distress for people left behind. The generation of false data and uncontrolled dissemination of unfiltered information may, it is feared, foster social unrest and destabilize democratic institutions.  

All of these predictions, for good or for bad, center on the word “intelligence.” If it is defined as the creative use of information towards a specific goal– my definition, to be sure — then it exists along a gradient and there is not an opposing term. In that case, the mixed picture about the future of AI seems accurate. Humans can process information to both noble and destructive ends. If machines are provided information by humans, then it is likely that there will be worthy and flawed outcomes. It is not a reflection of the logical structures or neural networks that are built into us as humans or artificially placed into machines. It simply is the nature of intelligence. Information is agnostic and it can be processed in a limitless number of ways; there is no guarantee of what will happen when it is processed. 

On the other hand, if we center our predictions on the word “artificial,” there is an opposing term, namely “genuine.” Speak looks beyond AI as intelligence and forces us to think about its impact on interpersonal communication and interactions. The design of the robots that are being created in fiction and in our world of 2025 is steadily improving. The voices become more lifelike, the reactions more emotionally appropriate, the reactions more convincing. They display keen intelligence and manifest seeming empathy with their handlers. Like the artificial friend in Klara and the Sun by Kazuo Ishigura, the robots may even appear to have more feelings and awareness of the ever-changing psychological state of their owners than family members and friends. But it will always remain artificial. Speak forces us to ponder whether interactions between human beings have an element that cannot be programmed, that is not simply manipulation of information. It is that piece that accounts for the genuine nature of relationships between people and it is that component that is vital for human growth and maturation. The interconnected stories in Speak raise the concern that reliance on AI, in whatever embodied form it takes, to provide support and companionship may inevitably fail and leave damaged humans in its mechanical wake. The intelligence of AI may not be sufficient for humans to thrive. It remains difficult to put into words exactly what to call this additional component of human interaction. Thankfully, there is literature, and creative novels like Speak, to help us grapple with what it might be and to help us steer a course where AI is developed thoughtfully with full awareness of its limitations and potential for good and harm. 

SPEAK  
Louisa Hall 
EccoPress, New York 2016, 356 pp 
Web image by Medhum.org

Before modern medicine, superstition mediated pregnancy and childbirth. Once, divine wrath or distressing mental images risked what was called a monstrous birth. To reduce risk today, pregnant women consult prophetic prenatal technologies and the ceaseless cacophony of digital media. Twice pregnant, New York Times pop culture and internet reporter Amanda Hess found herself both drawn to and repelled by media advice and the collection of data enticed by apps or insisted on during clinical encounters.  

Her book Second Life: Having a Child in the Digital Age—part wry memoir, part savvy investigative reporting—asks whether current technologies deliver a better, if not perfect, baby or the maternal well-being they augur. She, even more significantly, worries about the consequences, personal, relational, and ethical, of pursuing perfection.  

Hess couldn’t resist interacting with chatty, advice-giving apps. One first tracks her fertility and then, in weekly installments, shows her what a developing “creepily realistic CGI fetus” looks like. (Another app likens fetal development to the temptations on Parisian bakery shelves. A macaron, for instance.) Visual creepiness aside, Hess has unsettling thoughts about surrendering intimate information about her body to unknown recipients. She discovers that a popular app she regularly consults was developed by two brothers in Belarus backed by venture capitalists. Its surveillance exposed her to endless marketing schemes that hardly considered anyone’s well-being or financial resources. Curious about the history of fertility tracking before and after apps, Hess discovers a throughline of troubling eugenic ideologies. It travels through the advice of a popular pregnancy influencer. 

Deep into Hess’s first pregnancy, a “concerning” routine ultrasound detected what could be Beckwith-Wiedemann syndrome (BWS), a rare genetic condition. Its possibility sent Hess anxiously scanning the internet, against her doctor’s advice, for medical information and possible maternal causes. Was it the wine? The Ativan? A fever? Her age? Unspecified guilt followed. But neither the internet, genetic testing, nor her doctor could reassure her about a cause or the possible extent of the condition. The internet images she sought of children with the full range of BWS anomalies hardly quelled her anxieties. Only after her son’s birth was a form of BWS confirmed.  

Hess sympathizes with the wish to deliver a healthy baby and the temptation to seek any available service or technology to that end. After all, that’s what she wanted. However, the prospect of birthing a child with an anomalous body leads her to question the meaning of the ubiquitous parental qualification: “As long as the baby is healthy.” Healthy, she finds, translates to normal. Anticipating a not-normal child makes her feel protective of her son even before his birth. After it, she deflects thoughtless remarks from strangers about his enlarged tongue protruding from his lips. (Corrective surgery later enables less compromised breathing and speech.) She and her husband care for and about him for the distinct person he is. About her initial anxieties about his body, Hess writes, “My nightmare . . . ended when I met my son.”  

Hess’s standout chapter “Growth” recounts her evolving response to her son’s imperfections and her efforts to manage others’ IRL and internet responses to him—a task she finds essential to parenting him. I hope this chapter is widely read, certainly by future parents, but also by clinicians, genetic counselors, and those who teach them.  

Some accounts of caring for an imperfect child cast the child and the parental relationship as special. Some view chronic illness or disability as a familial burden. Hess does neither. Instead, she folds caring for her son into the course of her life and her family’s. In that way, she continues a contribution of Michael Berube’s complicated 1996 Life as We Know It, however, adding a millennial’s navigations of current medical technologies and media static. Hess further envisions a world that participates in the care of all children, one that refuses to blame or isolate families with less-than-perfect children. That world would reduce parental anxieties more than screening for concerning “problems.” Philosopher of care and mother of a profoundly disabled child, Eva Kittay, would agree. 

Some readers might say that Amanda Hess’s financial and other resources make her generous perspective possible. She agrees. She’s half of a two-parent family. As journalists, she and her husband have more flexible schedules than countless other parents. But in the world Hess encourages, parental status would be irrelevant to their child’s care. 

Without being prescriptive, Hess’s lively, self-reflective story provokes readers to think twice about rejecting imperfect children—anyone’s—and to notice the eugenic logic underwriting rejection. Her book tests the claim that ever-evolving technologies enhance maternal well-being, empower parental choice, and guarantee healthy babies. (Ironically, a researcher Hess encountered reported on increasing evidence of BWS in IVF conceptions, many intended to screen for anomalies.) In fact, far more children are permanently harmed during their lives than are born ill or disabled. Rather than relying on the billion-dollar industry of prenatal testing, aren’t we better off, Hess asks, accepting and taking better care of all children however they’re born? 

Second Life: Having a Child in the Digital Age
Amanda Hess  
Doubleday, 2025, 272 pages 

The Knick portrays all that goes on in and around a hospital struggling to provide care for the poorer classes in lower Manhattan during the early 1900s. It shows that many of what were then considered important advances in medicine, technology, society, and culture were later considered dangerous, unethical, barbaric, inhumane, and racist. The series asks whether health care of any era, along with associated social and cultural factors at work, are destined to be seen sometime in the future in similar ways. 

Storylines of the Poor and the Famous 

The Knick was inspired by the Knickerbocker Hospital, founded in Harlem in 1862 to serve the poor. In this twenty-part television series spread over two seasons, the fictional Knick is located somewhere in the lower half of Manhattan around 1900. The time covered during the series is not marked in any distinct way. The characters do not age much, and although fashion and customs remain static during the series, the scope and significance of advancements that come into play were actually adopted over a longer time than the episodes cover.  

The series builds on some known history. The central character, the chief surgeon Dr. John Thackery, is modeled on a famous surgeon of the time, Dr. William Halsted, in both his surgical adventurism and in his drug addictions. The character, Dr. Algernon Edwards, who is an African-American, Harvard-educated, and European-trained surgeon, is based in part on Dr. Louis T. Wright, who became the first African-American surgeon at Harlem Hospital during the first half of the twentieth century.   

Storylines of human drama and folly run through the series. Among them are medical cases both ordinary and bizarre, heroic successes and catastrophic failures, loves won and lost, gilded lives and wretched existences, honor and corruption, racism and more racism. Within these storylines are the scientific, medical, and industrial advances of the period, as well as the social frameworks that form fin de siècle hospital care and medical research in New York City.   

Some of the industrial advances adopted by the hospital include electrification, telephone service, and electric-powered ambulances. We see that transitions to these new technologies are not without risks and catastrophes: patients and hospital staff are electrocuted, and when the ambulance batteries died — a frequent occurrence– many of the patients they carried died, too. 

Medical advances integrated into various episodes include x-rays, electric-powered suction devices, and an inflatable balloon for intrauterine compression to stop hemorrhages. Thackery is a driven researcher taking on some of the big problems of the day, such as making blood transfusions safe, curing syphilis, and discovering the physiologic mechanisms of drug addiction. We see how he learns at the cost of his patients, or rather his subjects. We also get a glimpse of movements directed at population health. For example, epidemiological methods are applied to find the source of a typhoid outbreak, which drew from the actual case of Mary Mallon (aka, Typhoid Mary). Shown juxtaposed to the advances in epidemiology is the concurrent interest that was rising in eugenics and its broad application to control for unwanted individual traits and particular groups of people. Research ethics and regulations were a long way off.  

Time Tells 

Each era possesses its own hubris based on the technological advances and social progress made over those of previous eras, and on the certainty that the mistakes made before have not been repeated. Time reveals whether those attitudes and positions were justified. For Soderbergh, the director of the series, this idea was top of mind, and he stated as much in an interview published in the August 1, 2014 New York Times:  

There are so many treatments on the show that make you gasp because they’re so wrong…It just makes you wonder what treatments we’re all taking at face value that 10 or 15 years from now we’re going to be told, ‘Well, that didn’t work, and in fact that makes it worse.’  

Early twenty-first-century medical care has benefited from advances in molecular biology, medical devices, surgical procedures, data analytics, and epidemiological methods among others. People only participate in experimental protocols with their informed consent, and health care workforces are highly diverse. Impressive indeed, but none that in any way dwarf some of the advances shown during the series, and many that make twenty-first-century medical care possible. And, while The Knick shows how patients were often victims of bad science, bad technique, unproven technology, and malfeasance, the current era of health care is rife with risks for its own harms. Based on a complex analysis from several sources, the U.S. Institute of Medicine estimated in 1999 that between 44,000 and 98,000 people die from preventable medical errors each year in the US (To Err is Human). In 2016, researchers from The Johns Hopkins University reported in the May 3, 2016 issue of The BMJ (The British Medical Journal), that at the time The Knick was running in 2014–2015, medical errors were the third leading cause of death in the U.S. While the the accuracy of these estimates could be challenged, we can take from them with some amount of certainty that medical error exists today to a significant degree.  

The Knick pushes us to consider and to beware of what we may see resulting from modern-day biomedical and technological advances as time passes. To the medical drama and personal drama of most television medical serious, The Knick adds the drama of time. 

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The Knick
Steven Soderberg, director 
Cinemax 
Twenty episodes, 2014-2015 
Running time: 42–57 minute episodes 

Awards
Peabody Award 
Six Primetime Emmys 
Three Critics Choice Television awards 

The Knick began streaming on HBO Max on February 20, 2021 

The Remarkable Life of Ibelin is a 2024 documentary about the life of Mats Steen, a Norwegian man who died from complications of Duchenne Muscular Dystrophy. The movie explores how Mats, unbeknownst to the people around him, adopts a full online persona that allows him to experience the fullness of the human experience through a video game, experiences that were denied to him in the physical world because of his illness. 

I grew up during the nascent age of video games and home computers. While our parents looked at computers as tools that might help us in the future, as children, we looked at computers mostly as a source of fun. We crowded around arcade machines at convenience stores and arcades, throwing away quarters until our pockets emptied. We congregated at our friends’ houses after school and on weekends, befriending whoever was fortunate enough to have a console or a computer powerful enough to support the latest graphics. 

Now though, as a parent and physician, my nostalgic view of video games is tempered by a mixture of skepticism and fear when it comes to games and internet technology. To hear the skeptics discuss it, video games are one of the root causes of the obesity epidemic, and online games and social media are part of the teen mental health crisis. Schools bring in experts to teach parents the perils of children spending time online while pediatricians pound out guidelines that describe “healthy limits on screen time.”  

This month, on Apollo On Call, we sit down to talk about video games and how there is another side to this narrative. We look at the story of Ibelin and talk about how video games may add to our lives in ways that many of us have never considered. 

Thank you, Mats, for showing us a different way to think about the online world. 

Luki and Dave 

The Remarkable Life of Ibelin Trailer

Images of Mats Sheen and Ibelin from Mats’ Facebook page and Medieoperatørene / Euforia