Avoiding the Uncanny Valley in Serious Illness Communication: Josh Briscoe

Eric: Welcome to the GeriPal Podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: Today, we’re delighted to welcome Josh Briscoe, who is assistant professor of medicine and psychiatry at Duke, and a palliative care physician at the Durham VA Medical Center. Welcome to the GeriPal Podcast, Josh.

Josh: Thank you so much for having me.

Eric: I am really excited, beause ever since I read Josh’s post on his Substack, it’s called, Notes From a Family Meeting. We’ll have links to it. He wrote a post on, “Remaining Human: Avoiding the Uncanny Valley”. So we’re going to be talking about the uncanny valley when it comes to communication and palliative care, but before we talk about that, do you have a song request for Alex?

Josh: I do. Alex, could you play for us “Listen to the Music” by the Doobie Brothers?

Alex: Mm. And why this choice?

Josh: Well, two reasons. One is I think only real humans can appreciate real music, so this is real music. And I think also some of the stuff we’ll be talking about, when it comes to communication, I mean, a lot of the clinical encounter is listening to the music. There’s some intuition around it that’s hard to learn and teach, and that’s like, “Listen to Music”.

Alex: Great. All right. Here we go. Here’s my take.

(singing)

Josh: Awesome.

Alex: Thanks. That was fun. Good choice.

Josh: Great.

Eric: Okay, Josh. I’m going to just jump into it the very first time I heard the words uncanny valley was, “The Polar Express”, when that came out. It was that Tom Hanks, I think Steven Spielberg animated feature where the 3D visuals were amazing, how they created these characters, but they all looked a little bit… They looked human, but not quite human, giving it a eerie, strange, and somewhat, for some people, unlikable experience. What is the uncanny valley?

Josh: Yeah, and my first experience to the uncanny valley was reading a editorial piece that I wrote about in the Substack newsletter and this reflection from the clinical encounter of this person who encountered it in their own experience of dealing with their family’s serious illness. But the uncanny valley is what happens when you’re dealing with animation, robots. And you would expect as things become more humanlike that eventually they just appear perfectly human, it would be a linear association the more humanlike they appear, but there’s this drop off in our affinity for them when they appear more human than just a robot arm on an assembly line, but less human than real human, and our affinity drops off tremendously.

Eric: So an example would be Mark Zuckerberg in the congressional hearings, right?

Josh: Yes, exactly. Yes.

Eric: So it really looks like Mark Zuckerberg is real and not a robot, but like 95% there.

Josh: Yes, exactly. And there’s so many examples of this. I mean, there’s examples, as you mentioned, animation, there’s examples in robotics, there’s funny examples from real life where people behave like robots, and then there’s more serious examples, like the ones I write about in the clinical encounter.

Eric: So yeah. Tell me about the clinical enc… How do you think the uncanny valley fits into medicine and communication training and skills?

Josh: Yeah, so I think of things on a spectrum here. So one end of the spectrum is somebody who’s just a total novice, and it’s clearly very awkward and they’re not used to talking to people in a clinical encounter, like a medical student or something like that. And that’s very human, to be awkward. And the other end of the spectrum is somebody who is very skilled, very intuitive, very warm, just a master communicator, clinician, and the encounter almost feels just like a conversation. It flows very well. But from the path from novice to expert, you run across a couple of bumps in the road. One bump is just the classic pitfalls we often talk about in serious illness communication: being very jargony, very information focused, and just providing information. And then one other pitfall is this uncanny valley, where you know the right things you should be doing and saying, and you try them, but there’s no feeling behind them because you don’t actually believe what you’re saying.

In your mind and in your near heart, you’re thinking about the next thing to check off your list. You’ve got other patients to see, you’ve got medicines prescribed, you’re worried about what this patient’s going to ask you, you’re thinking about their prognosis, whatever the case may be. So it’s like, okay, well I just need to say… All right, now they’re crying. So I need to give them tissues and say, “This must be so hard for you,” and so there’s no feeling behind it. It’s just another checkbox, and people feel that. People know that. I’ve encountered it when I’ve been on the other side of the clinical encounter with clinicians. And I’ve seen it happen with clinicians. They just appear distant.

Eric: Yeah. I think about, years ago, Alex did a cartoon called, “Take Out the Trash.” Remember that, Alex?

Alex: Yep.

Eric: You want to describe what “Take Out the Trash” was?

Alex: We’ll link to that in the show notes associated with the podcast. That was a couple of cartoons, and one of the cartoon was using key palliative care communication techniques to argue with his wife about when she tells him that he should take out the trash. And the idea was you don’t bring these techniques home. They don’t work so well outside of the clinical context in the home setting.

Eric: So the fascinating thing about that is it should work. We use these techniques all the time. And I think what happens is that it’s very clear, those techniques that we’re using, so it feels inauthentic to those who know us the most, because it’s not what we would say. So they can pick up that that is inauthentic, when we use nurse acronyms with our loved one, or nowadays you’re using remap pneumonics, rather than just actually talking how we usually talk.

Josh: Mm-hmm. Yeah, totally. I think so if we step back and look at the bigger picture here, because oftentimes when I’m consulted to see a patient for a difficult conversation, and then there’s an impasse in the communication, the team’s hoping for some secret password that I’ll give, that I’ll say, like, “Come in and give us the password to this family meeting,” and suddenly a new path will open up out of this moral distress. And oftentimes there is no password. There’s no special thing to say, but sometimes we’re tempted to treat serious illness communication in that way, conversational judo or something, that I can maneuver around an encounter and create something new. And oftentimes an expert in communication can do that, but that’s not wholly because, I think, that we’re just applying the right techniques. And I think that’s a temptation of modern medicine. And again, to step back and look at the bigger picture, there’s a book that I wrote, or I didn’t write it, goodness, I read it in my intern year, by Jeff Bishop.

It’s a book called, “The Anticipatory Corpse”, and he talks about a lot of different things in the book, but one of the things he talks about is that the practice of medicine has become disoriented from its pursuit of health. We want to help people be healthy, but really it’s hard to understand what that is. There’s a lot that factors into that, so what it devolves to is really, he argues, keeping matter in motion. As long as we move the CRAT in the right direction, the blood pressure in the right direction, as long as we just keep the matter in motion, then we’re succeeding, technically, in medicine. And when I read that book my intern year, it possessed me.

And he doesn’t offer many solutions in the book, and I had to find a solution. So that’s led me down this path of trying to figure out uncanny valley and a lot of the other stuff I’ve written about in the newsletter, just trying to figure out why are we so bound by techniques in clinical medicine? For example, when y’all have talked about, the what’s in the syringe of palliative care? All these studies in this fringe… We want the special key. We want the thing that’s going to fix everything. And oftentimes the existential landscape of serious illness, there’s no special thing. Oftentimes, it’s human presence that does the most healing.

Eric: Yeah. Well, it’s not just being present, though. Yeah. There’s more to it than just showing up. And yeah, I want to go back to something else you said. So is it that medicine is changing from decades ago from being more technique and more robotic, less authentic emotional sharing, or is it that the expectation of doctors has never been that we’re going to be warm and fuzzy and talking about emotions, so the expectation, it’s like my expectation with a Roomba. I’m not going to share my feelings with my Roomba. The Roomba doesn’t even look like a human. But if you start developing robots that look human, your expectations that you’re going to have on them is going to increase, and when there’s a disconnect between your expectations and what you’re actually seeing or hearing, you start reaching this uncanny valley.

So the old school physician in their white coat and their ties who you may not have a connection with, you don’t have an expectation that you’re going to be sharing the warm and fuzzies with them or they’re going to be sharing your emotions. And it’s only when we start to train people around the importance of empathy in medicine, that’s where we start running into this risk. What are your thoughts on that?

Josh: I don’t know. Let’s say you’re talking to an oncologist and they just told you that you have cancer, and you’re wearing the tie and the white coat and all the accoutrement of a physician, just like you described, and then they robotically go through the rest of the encounter. And this is the classic, “My doctor told me I have cancer and all I heard after that was blah, blah, blah, blah, blah.” Everything anti-VitalTalk, they just did everything wrong. But they were totally robotic, et cetera.

Eric: What’s that movie, the other video example that you had, Alex?

Alex: Well there was one from-

Eric: “Wit”.

Alex: From “Wit”, yeah. Probably the oncologist in “Wit” explaining it to the Emma Thompson character.

Eric: Maybe we can find that and put the link to that, too.

Alex: Sure.

Josh: Yeah. And so I think even then, I mean, that is a profoundly isolating experience to come that close to… I mean, you may not have considered your own mortality before and your own vulnerability, and in that moment you might feel profoundly alone. So regardless of your expectations of the person in the office before you, the physician has an opportunity to connect. Before they’re a doctor, they’re a human, and so they have an opportunity to connect. And so the patient might not pick up on, well, yeah, my doctor didn’t miss something, but when they do act empathetic, then it’s like, oh, this is weird. This is socially awkward. So yeah, they might enter the uncanny valley, but even before the uncanny valley, you run into the problems of just things like VitalTalk are meant to correct. A risk of things like VitalTalk is that, oh, now we fixed it, and in fact there’s a hidden pitfall here, which is the uncanny valley.

Eric: Yeah. Let’s dive into technique, too, right? So you also discuss, in your post, around the dangers of technique. Can you also describe that a little bit?

Josh: Yeah. So this isn’t an idea original to me. So folks have been writing about technique and technology, not just in medicine, but just some broader society for a long time. And this idea of technique that I use throughout the newsletter, not just in this piece, I got from a French philosopher by the name of Jacques Ellul. And his understanding of technique is that it is something that is bent towards efficiency. Technique is everything we do towards efficiency, and technique, in writing a whole book about it, he described it as this metastatic process that takes over. That efficiency must take over because it has to control the whole system in order to be perfectly efficient. And medicine can be that way. It’s not just that we care about the creatinine, we need to care about the whole kidney, the heart and the kidney, the whole body, in fact, the whole social environment, in fact, the whole culture. And suddenly, because our whole human experience is mediated through our bodies and mediated through our health, clinicians and physicians and medicine has something to say about everything.

And then we figure out, well, how can we make everything efficient from a health standpoint, how do we link it back up perfectly, efficiently to medicine. And so this relates to communication, because as I mentioned earlier, people want, how do I get through this expeditiously? How can I get the patient to make a decision? And not just get the DNRs we cynically talk about, but just get to a decision. How do we get the secret password here? That’s all efficiency talk. That’s all technique talk. And while I agree, we’re not sitting around shooting the breeze with folks, that’s not my job, at the same time a lot of this is recognizing that we’re facing just the human condition, tremendous existential barriers in the clinical encounter. That’s a lot of our work.

And when I think about this and talk about this, I’m reminded of a scene from “When Breath Becomes Air”, by Paul Kalanithi, where he’s talking to his oncologist and he’s wrestling with prognosis, like, “Tell me how long I have, because if I have this long, I’ll do this. If I have that long, I’ll do that.” And she tells him what she thinks, but his description of her is just so poignant. I’m not going to quote it perfectly, but he says something along the lines of she said it not like a doctor, but somebody who was with him on the edge of the abyss. And in that moment, she was not in the uncanny valley. She was there with him as a real human, not even as a physician, but somebody who needed hope, just like he did.

Eric: So let me ask you this. We’ve mentioned VitalTalk, a lot of communication training, it starts off by a lot of if, then statements. If patient does this, you do X. You deliver bad news and they look sad, you say, “I can see this news is not what you are hoping for.”

Alex: It’s as if you’re it a robot that’s been programmed with if then statement codes.

Josh: Yeah, so I think-

Eric: And this is an oversimplification, right?

Josh: Sure, yeah.

Alex: Yes. Yeah.

Josh: I think part of this is that this culture of technique, and others like Postman have talked about, is a technonopoly, which is just this idea that technique takes over. You bring that culture to VitalTalk. You say, “I’m going to get the secret password from VitalTalk,” and you go in there and you’re like, “Okay, I’ve got the secret passwords,” and you leave, and you’re like, “All right, now I’m going to go unlock some family meetings and really figure this out.” And I’ve said the right things, and that’s where you run into uncanny valley situation. I think there’s a way, you wouldn’t even necessarily have to change anything about the VitalTalk training, but there’s a spirit and a reflection on practice that the trainee would have to have and the trainer would have to guide them through about how do you feel about saying this? What is your inner experience around saying these words to another person? Do you believe this coming out of your mouth? Do you actually care that this is not the news they wanted to hear? Is that something you actually believe?

I personally can’t say that without sounding scripted, so that’s not something I say. And it took me a while to figure out what are the things I can say that I actually believe and are linked up with my heart condition, and that takes reflection. And so I think there’s a component in here with the trainees where you actually have to get down and help them reflect on their inner experience, which is hard because so many physicians have trouble with describing their inner experience. We don’t talk about feelings a lot. We’re doing a better job now talking about burnout, moral distress, and these sorts of things, but we often don’t talk about how I feel, how this makes me feel.

Eric: Yeah. I wonder when you’re in with trainees… Because I feel like a lot of times it comes around… My personal feeling is, oh, this just is not coming across as authentic, and then I have to think about what it is. So, for example, if a person starts crying, if then statement starts working, trainee reaches out really awkwardly to touch someone’s knee and you can see that they’re awkward now, the patient’s awkward, and it just doesn’t feel authentic. Versus, Patrice Lars, one of our nurse practitioners, she would use touch all the time, and that’s her. That’s what she does. If I do it, it’s just weird because I feel awkward doing it. So I don’t use a lot of touch. How do you think this through with trainees?

Josh: Yeah. So when I talk to trainees about it, because we are so bound up in our heads, what’s the right answer for the multiple choice test, how do I get an A here is our whole training experience. And so I’m going to tell them they’re in training and I’m there with them, and so I want them to go a little bit in the opposite direction. It’s going to feel like they’re in free fall. Stop being the expert. Stop trying to think of the right answer. Stop thinking the physical exam or the differential diagnose, whatever, and just be there. You’re getting this news. Can you imagine you’re hunched over a toilet bowl puking your guts out and you know that you’ve only got weeks left? Can you really get in that head space and that heart space and just be there, and stop being the expert?

Now, that’s not the end result. At the end of fellowship or at the end of the whole training, I don’t want them to always be in that space, but they need to feel what that feels like so they can recalibrate their pendulum here, their own hyper intellectual side. And sometimes you got to swing a little far in the other direction to find where the middle ground is. And I tell them it’s going to feel like free fall, because it felt like free fall to me. When I was going through training, I had so much trouble. I wanted to be the expert. I did not want to look stupid in front of my patients, but it felt like I was going to fall apart if I just felt connected empathically with my patients. And I had advisors and mentors and psychotherapy supervisors who would say, “Just feel it.”

I mean, what’s the worst thing that’s going to happen? You cry in the clinical encounter or you don’t know what to say? I mean that those are human things. And maybe you’ll say the wrong thing, maybe you’ll do the wrong thing, and that’s part of human relationship as well. And you repair and you apologize and you move on. But trying to calibrate that pendulum is a big part of what I’m doing there.

Eric: Yeah. So many questions, too, and thinking this through. Going back to the technique issue that you quote, that it transforms everything it touches into a machine. And we were just talking today in our group, the system is perfectly designed for the results it gets. We are part of this machine. I guess I’m now going into if, whens myself. I’m thinking are there specific things that we should be doing differently in the technique phase, how we’re training people into using… Should we be even using pneumonics or guides or any of these things?

Josh: I mean, I’m an early career physician, and so I can’t speak authoritatively on this. And so I’m not here to upturn everything, and particularly all the evidence that shows the communication skills training is helpful. I mean, I’ve been in some really terrible family meetings where somebody just had a little bit of VitalTalk. They’ve argued with patients, there’s yelling, all this sort of stuff. I’m sure you guys have as well. So the communication 101, some folks need that. And so we’re really talking about communication 401, more advanced thoughts about communication. So I think, though, the expectations around what we’re hoping will happen in serious illness communication could be retooled. I understand there’s a place for we have to justify our existence in a healthcare system that counts cost. We need to show that we’re bringing something concrete to the table. Unfortunately, even professions like chaplaincy need to do that. I mean, why should we pay for you? We need to make that argument.

And at the same time, I think a lot of this work involves coming in and slowing things down. So much of medicine moves so quickly. And again, going back to the efficiency piece and the machine piece, have you gotten the goals of care yet? Have you gotten the code status yet? Have you gotten the disposition yet? And it’s just like, “We need it yesterday.” And so much of my work involves, well, let’s slow down, because when you slow down and stop talking for a little bit, you create a space that allows people to reflect and breathe. Just like a time limited trial does in the clinical encounter. A little trial of that with your clinician colleagues can be helpful as well. Let’s slow down and actually reflect on what’s going on here, and just to allow these more human elements to rise up so that machine isn’t crowding them out.

Eric: Do you also think that there’s a role for increasing informality, because, oftentimes in these clinical encounters, things are incredibly formal. The statements, the responses, it feels awkward. Sometimes we go into these rooms with a mega palliative care team, and only one person is doing the talking. It feels a little bit scripted. There’s a lot of questions that the team’s asking, well, one person in the team. And is there a role of just saying you know what? Forget you as a doctor right now, or as social workers, think about you as a person meeting this person at a bar. And your task today is just to understand this patient as a person if you were meeting them at a bar. Don’t think about understanding this patient as a person as trained in value pmnemonic, but just figure out…

And there’s potentially also a role of, we often talk about, rapport building. That’s a lot of rapport building. But for me it’s also I find it much easier to empathize with people when I have a connection with them, and that means I have to do some work to myself to make that connection. It’s a two way street.

Josh: Yes, I totally agree. And I think, I mean, you got to read the room a little bit because you probably wouldn’t meet a 90 year old little old lady in a bar, so it’s hard to imagine, right?

Eric: You never know. Bars I hang out with.

Josh: I mean, I am intentional. I don’t wear a white coat. I don’t wear a tie. I mean, these are intentional decisions on my part to deflate that power differential in the clinical encounter, whereas other people would say, “Well, no. Patients want that expert, white coat, tie, really buttoned up image.” I find this works well for me, and when I read the room and I hear patients using particular metaphors, I work in the VA and they’re often using war metaphors or sports metaphors, I pick up on that and I’m able to reflect that back to them, and it comes across informal.

I’m able to use them with some facility, and it’s warm and informal, but you have to have an ear for it. You have to listen for it. You can’t just go in there and be like, oh, I’m going to shoot the breeze. I really am in a bar, and I’m just going to have drinks with this guy. As much as we like to say don’t have an agenda, I mean, at the end of the day you’re a clinician. You have a clinical agenda, even if you’re not white knuckle gripped onto a code status or something.

Eric: Yeah. And oftentimes that agenda is I just go on and get to know the patient today. We’re going to build some trust and some rapport.

Alex: Mm-hmm. I like to tell my trainees… Often with the earliest stage trainees, they’ll go in the room and they’ll ask the patient what brought them to the hospital. And that’s the question that they’re taught to ask in med school, and then everything proceeds from there. And that’s not the information that we’re looking for as much when we’re the palliative care consult team. I ask them to think of themselves as a taxi driver trying to get to know somebody, or a hairdresser. I don’t use the bar analogy, because it might be too-

Eric: It’s an Uber driver now, Alex.

Josh: Yeah.

Alex: Yeah, Uber. There you go. Bar could work, but it does have, I don’t know, innuendo overtones.

Eric: All right. Uber driver.

Alex: Uber driver. And I find that helps to get people out of themselves. Ask people where they’re from. Did they grow up here? At the VA, what branch of the military did they serve? Ask them what they did for work. Were you ever married? Did you have kids? Who’s important in their life now? These are just basic getting to know people question that help you build that rapport so that you can have more authentic conversations when the conversation gets to more emotionally laden content.

Josh: Totally. [inaudible 00:28:35]

Eric: But even that risks uncanny valley, because I have definitely seen people go through those list of questions in like 30 seconds, where it feels like I’m not even sure that they’re listening to the response. They’re just going through those questions.

Josh: Yeah. I’m supposed to ask this, and so yeah. I think part of that, yeah, is the rapport building. I think part of it is, as I was saying before, it’s the creating space and slowing down. And just like you were saying, Eric, you could go into this with a very technical mindset of okay, check these boxes, and then you’re in the uncanny valley. Versus I’m going to go into this and really work on holding space here, creating space, and in this space I’m going to trust that something human is going to come out of me and out of them and out of this encounter. We’re two people meeting each other before we’re a physician and a patient meeting each other, and so what human possibility might come out here? And there’s lots of possibilities. There might be sadness and there might be fear, any number of things that could come out, and, ultimately, at the end of the day, hopefully, compassion. And I find that sometimes when I’m consulted into really difficult situations…

Well, I mean the nature of inpatient medicine is that patients and their families don’t often know their doctors. These are all new strangers. They’ve never met before. They’re always rotating around. But nobody has had an opportunity to really get to know them and have a relationship, any kind of rapport built with them, and then things blew up over something, and now you had no rapport. You had no money in the bank. You had nothing. You had no relationship. And it’s so much harder to build that up and so much harder to create that space that I’m talking about when everybody’s hackles are up and everybody’s angry. It’s challenging.

Alex: So here’s the thing, though. I would pause it. So I’m a mixed mind about this. So one thing I told a palliative care fellow when I was on last month is that these conversations are not like orchestral music, or classical music, where you have a specific notation, you have a specific time signature, everything is scripted out. How loud you’re supposed to play, how soft you’re supposed to play, the exact notes and the sequence in which you play them. These conversations are more like jazz, where there’s a general outline and structure, and within that, it’s really important that you improvise and that you hand things off to other musicians so that they can also have a turn to be featured, and that there are opportunities for more structured parts and less structured parts. There are opportunities for exploration and trying new things and branching out in new directions. That’s on one hand. That’s all I have in mind on one hand. Serious illness communication is like jazz.

On the other hand, I also think that there are some people who can be so genuine and present using the exact same language every time, because for them it’s not about the language that they use and it doesn’t become stale. They have that ability to inhabit those words every single time they use them, so I am of a mind that there’s a tension there, in my mind, between the classical music conversation and the jazz conversation. But I’ve seen it both ways. I still think it’s more like the jazz than it is like the classical music. That said, if you find the words that work for you and you are able to get them to work every time, you should run with that, and be flexible for when there are situations that arise that require you to go outside of those the words to use that have worked so well for you.

Josh: Yes. I love that. And I’ll just take your jazz metaphor and analogy and run with it even more, and maybe this might be controversial, but I don’t believe that a patient’s goals of care are latent within them, that we just need to discover them. They’re actually, co-authored along with the clinicians. It’s not people are sitting around at home when they’re healthy and being like, “I wonder what my goals of care are. Let me think about them.” This is something they make up on the fly as they’re trying to figure out their life in the midst of serious illness, and the clinician is there to help them. All this stuff about communication and everything we’ve been talking about, I bend all of that to that purpose about how can I help this person? And I totally agree with you, Alex. That looks a lot like jazz. I’m finding it’s hard to teach that because it’s like, well, yeah, sometimes I’ll say this, but not all the time. Sometimes I’ll do that, but not always. And in fact, the exceptions aren’t always exceptions anyway. It’s challenging. It is really challenging.

Alex: Mm-hmm.

Eric: Going back to the two-way street, we’re asking the patient to share a lot with us, and that is our role, but also occasionally sharing with them. You mentioned crying, so you’re sharing visibly, audibly an emotional state. Sometimes if there is something I have in common with a patient I’ll share and we’ll talk about that, and we’ll riff on that for a while. And man, that automatically creates this, not automatically, but that often creates a pretty tight bond.

Josh: Yes. Yeah. I think there’s a really helpful role for that. And again, you need to think about your intention. Are you just spending hours shooting the breeze? Probably not. Are you looking to get care or affirmation from the patient, you’re just falling over yourself sobbing and they now need to comfort you? Versus, I mean, just let’s talk about this football team, or whatever, this basketball team, and just allow them to have a human breath of fresh air. They’re in the hospital for the past 60 days, and they haven’t had been able to talk to anybody about their favorite hobby. Let’s just have a breath of fresh air and have a human conversation for a little bit. Oh yeah, you like this basketball team too? Let’s talk about it. I think that can be of great service to folks. Totally.

Eric: I also love that you pointed out who’s caring for who, because we’ve definitely seen it where people are sharing a lot of emotions, and now the patient becomes, in a way, the therapist of the physician, and that just does not turn out well.

Josh: No. So that’s not like those emotions are never allowed, but you need to take those emotions somewhere else. You need to process them with your mentor, with your therapist, whoever, but not with the patient.

Eric: Yeah. As-

Alex: Can I…

Eric: No, go ahead, Alex.

Alex: I was going to take us to a different direction. If you had a follow up to that…

Eric: No, no. Go ahead.

Alex: All right. I was going to say I wonder if we could each disclose instances where we’ve felt we were dipping into the uncanny valley. And I’m happy to go first. So when I was a trainee, when I was doing my palliative care fellowship, I remembered some words that I learned actually in med school from Steve McFee, who was one of my mentors at UCSF and was a co-founder of the comfort care suites at UCSF for patients who are imminently dying. And he either gave me or recommended this book by Ira Byock. Oh boy, and I forget the title. But in the book, Ira, who’ve had on this podcast, talks about words for a dying patient to say to their loved one, or maybe it’s a loved one to their dying patient. And they’re things like, “I love you. Forgive me. I forgive you. I’m sorry.” And Steve McFee, one of my hero mentors, would actually write these out for patients with serious illness on a prescription pad and give them to the patient and say, “You need to use these words with your loved one. Put them in context, use these words.”

So I tried that, and the first time I tried that it worked spectacularly. I was in a home hospice visit, and I was with this woman in her thirties and her husband who was dying. And she said, “Do you want to see him?” We went up to their room together. We were not that far apart in age. And she crawled onto his bed. I sat on the bed. And she said, “I don’t know what to say to him.” And he was not able to speak at this point. He was very gaunt, emaciated, near death. And I said to her, “Here are some words you can use,” and I gave her the five phrases. And it was just beautiful. She was crying. It meant so much to her to have words to say to him. So I was like, all right, this works. This is great.

And then I tried those words in every encounter I had with a patient with serious illness, and it just started to feel stale, and the patient started to look at me, like, “What on earth is this?” And some of it was what works for one patient may not work for another, but another part of it was it started to become rote to me and a prescription like Tramadol, well, I don’t prescribe Tramadol. Trambadone. But some sort of prescription rather than a genuine conversation. So that’s my dip into the uncanny valley.

Eric: Yeah. It’s really fascinating, Alex, because I’m actually doing a two and a half month stint of palliative care, and I’m recognizing, on the fly, I’m using some of the same words. And it catches me because, while the first time I used it, it felt like, oh yeah, that worked really well with this patient, second time it felt like, oh, after I said them, ah, that’s interesting because why did I choose that word? Because I did it yesterday, and now it just feels very robotic when I said it. Because I’m getting into the habit of saying it because it worked really well the first time.

Josh: Yeah. I can totally resonate with both those experiences, and I’ve definitely had that experience with the four most important things, Alex, and I’ve tried that and sometimes it’s worked and sometimes it’s fallen flat. I think, for me, when you raise that question, a particular case comes to mind where I was caring for a woman with advanced ovarian cancer and she was nearing the end of her life and she was hoping for a miracle, and of course, miracle conversation’s very challenging. And I’ll just take a moment here to plug Eric’s recent transforming chaplaincy moderation of talk among chaplains on miracles. Fantastic.

Eric: Which I did nothing yet. I just listened to the chaplain.

Josh: Yeah. But it was just really good conversation, very helpful, because this miracle conversation on the bedside is so, so challenging, as y’all know. And so she’s talking about how she’s hoping for a miracle, and I had recently heard a way of handling the miracle conversation, “Well, what are other miracles you’ve experienced,” and asking that question. And I was like, oh, this is going to be the password. This is going to be the password that’s really going to figure out this miracle challenge. And I asked it and I asked it in the wrong spirit, I asked it in a robotic spirit, and it just fell flat. She was like, “None. I’m looking to be healed of my cancer.” She meant it very literally and it totally missed. And she was very much like, “What are you getting at here,” and it just fell flat.

It was surprising how much of a blow that carried to the relationship. I wasn’t able to really fully recover from that, from a relational standpoint, and as best I could do symptom management along the way. And then she ended up being discharged home and dying. But I mean sometimes these things, I mean, they have outsized impact on the relationship, and sometimes you think something huge and it’s actually not that big of a deal to the patient and you’re able to apologize and pull back.

Eric: Because I think that’s the other thing that sometimes I do or I see is people’s response sometimes has a clear agenda to it. They hear something and they say, “Okay, this is how I’m going to move this conversation in this current direction,” and they know it’s not exactly what they meant, but maybe it’s the inroad. And that part then feels inauthentic to what that patient is currently saying what’s important to them. And I most commonly see this is we spend 15 minutes talking about what’s important to them, longevity, living as long as possible is clear, but they mentioned five other things, quality of life, being comfortable, all these other things, and we quickly forget that living longer as long as possible was one of those things. We list everything else, but that in our aligning statements, and then it feels somewhat inauthentic and flat.

Josh: Yeah. I think some of this conversation we’re talking about right now reminds me of the work of Jennifer Blumenthal-Barby, who you all have had on the podcast before, and her discussion around nudging and how we think about ourselves as choice architects. So some of this factors in about if you view this clinical encounter as just purely one in which decisions are to be made, then you need to think about it as, okay, so I move the chess piece here and they move it there and then I move it here and I checkmate, and I do that through a series of remaps and nurse statements and nudges and all these sorts of thing constructed, perfect.

And that’s technique sneaking in again, versus if I view this… I mean, medical decisions are clearly very important. It’s a lot of what we help people do, but that’s not everything about the experience of serious illness. And I would pause it that’s probably not most of serious illness. Most of serious illness is not medical decisions. It’s the rest of life, and so how can we help people navigate the rest of their life? Yeah, medical decision making is important, but also the human aspects of just living with serious illness.

Eric: Well said, and when you brought up we help people shape their goals actually reminded me of the podcast on nudging, how what we say shapes what’s important to people. We could say, for example, “Most people in your situation would say that comfort would be important to them.” I’ve just used two nudges to push them towards saying comfort is important to them. We’re not going to go through the whole nudges thing, but yeah. We only have a couple minutes left, Alex, do you have any questions about this before I change subjects 180 degrees?

Alex: Okay. One last question from me. This is something that James Tulsky is worried about quite a bit, which is this issue that we’ve studied the communication of palliative care in serious illness conversation to the degree that we can say, “If you say this, then they will probably respond this way. If you say that, then they will probably respond this way.” And does this raise ethical issues around our ability to manipulate the conversation to our own ends? And I realize that is leaning into the robotic programming side of this conversation, and away from the authenticity and avoiding the end uncanny valley side of the conversation. So it’s a little bit tangential. And I wonder if you have any thoughts on that?

Josh: Yeah. I think that’s a major problem, and certainly a concern of patients. This erosion of trust around clinical medicine, and I don’t think the pandemic did us any favors in this regard, that people just look sideways at a lot of clinicians now like, “What is your motive here?” And this comes up sometimes with palliative care’s consult, “What are you, hospice?” This sort of thing. And so I think the bedrock of the clinical relationship is one of trust. People need to trust us, and people need to trust that we’re here to help them pursue health. What are we here for? And I think if we get mixed understandings around what we’re deploying medical technology for, if medical technology is for anything or everything or whatever, then people are going to start to get confused about what we’re in their lives for and what we’re trying to help with. I think we need ways to figuring out how to build back trust. In the individual clinical encounter, that’s a lot of what we do. But also culturally how can modern healthcare systems build back trust when people so often distrust systems? It’s challenging.

Alex: Yeah. Thank you.

Eric: I’m switching 180 degrees. So you have this amazing Substack, Notes From a Family Meeting. We don’t have a lot of people not writing in academic journals in our field. Not a lot of blogs out there. Not a lot of Substacks. What made you want to do this?

Josh: Yeah. So one of my impassions is I enjoy reading a lot of academic ethical literature, but it’s so often inaccessible to people. Either it’s behind a paywall or they just don’t have time to read it. I mean, Jeff Bishop’s book that I mentioned early on, “The Anticipatory Corpse”, it’s a wonderful, amazing book. And I’ve resigned myself that very few clinicians are going to actually read this book that I recommended them, because it’s just dense. And so one of my passions is trying to translate what I read and what I’m interested in into things that frontline clinicians can actually use. And it would be a little bit ironic for me to try to do that through academic journals. I’ve published some things there, but I try and make this as accessible as possible, particularly to trainees. And so Substack seemed a natural venue for that. And also I’m not an authority on this at all. It’s a way to be playful. It’s hard to be playful on academic journals. I can be tentative and exploratory and playful in ways I can’t really do in academic journals.

Eric: Yeah. I say you’re an exceptional writer, and incredibly thoughtful. And, one, I really thank you for joining us. I’m going to give you the magic wand question around this issue that we talked about today. If you had a magic wand, what would you want clinicians to do differently?

Josh: I would just want them to slow down even for five minutes before each clinical encounter and just really feel themselves, feel like how they feel about it, and put themselves in the patient’s situation. And if they could do that at each clinical encounter, I think we’d see a different practice of medicine.

Eric: Great. Alex, you want to take us home?

Alex: All right. A little more “Let the Music Play.” “Listen to the Music.” “Listen to the Music.”

(singing)

Josh: Wonderful.

Eric: Occasionally someone comes on our show and gives us a song that’s so perfectly aligns with everything that we talked about. That is one of those songs.

Josh: It’s a great song.

Eric: Josh, thank you for joining us on this podcast.

Josh: Yeah. Thank you.

Eric: And thank you, all of our listeners, for your support for the GeriPal Podcast. And Archstone Foundation, thank you for your always continued support.