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 are delighted to welcome back Gretchen Schwarze, who’s professor of surgery, she’s a vascular surgeon and bioethicist at the University of Wisconsin. Gretchen, welcome back to GeriPal.
Gretchen: Thank you.
Alex: And we’re delighted to welcome Justin Clapp, who is assistant professor of anesthesia and critical care and medical ethics and health policy. He’s a linguistic and medical anthropologist at the University of Pennsylvania. Justin, welcome to GeriPal.
Justin: Hello. It’s great to be here.
Alex: And as a guest host today, Alexis Colley, who’s a palliative care fellow here at UCSF and also a surgical resident. Alexis, welcome to GeriPal.
Alexis: Thanks for having me.
Eric: We’re going to be talking about surgical communications, really based off a series of four wonderful articles in JAMA Surgery, titled Innovations In Surgical Communication. We will have links to all of those, but we’re going to dive into that topic after we get a song request. Justin, I think you have a song request.
Justin: The song request is John Mayer, Say.
Eric: Are you a John Mayer fan?
Justin: No. [laughter]
Eric: How did you pick a John Mayer song?
Justin: We were looking for a thematically appropriate song, and Gretchen offloaded the task to me because my wife is a musician, so I asked her, and this was the song that she found quite quickly as the most thematically appropriate. And Gretchen had also mentioned it herself, so it seemed to be just made to be, I suppose.
Alex: All right. Here’s a little bit.
Eric: Is there some foreshadowing with those lyrics in this podcast?
Alex: Just say it. Say what you need to say.
Eric: Well, our last podcast was actually on not using the word “need,” by the way.
Alex: Oh, yeah. I don’t know how … [laughter]
Gretchen: We are well aware of your last podcast. [laugher]
Justin: Yeah. We know those folks.
Alex: We got to go back to Bob Arnold and say, well, if we’re not going to say “need,’ then what are we going to say? Jackie? Cruiser? Yeah, what do we say instead?
Alex: These are the options of what you could say.
Gretchen: I think what we’d want to say is, “Don’t say this, say that.” That is our entire structure.
Alexis: Yeah. Just to jump in, I’m curious to hear from you, Gretchen, just how this series of four articles from JAMA Surgery formed and came about, if you could say a little bit about that.
Gretchen: Yeah, I think probably the underlying story here is that I’m really good at doing negative randomized clinical trials, but there is a good thing about doing a big clinical trial, which is that you get tons of data even if you don’t end up with the result that you want. We did this very large PCORI study and audio recorded over 450 conversations from surgeons all around the country talking to older adults about high stakes surgical decisions with a lot of medical problems. And we had these amazing audio recordings and we’re like, “Well, what are we going to do with them?”
We actually applied for a grant from the Greenwell Foundation to try and map out what surgeons were saying. And I have to tell you, when we first went through all the data, it was pretty clear that the patterns of communication are really robust, meaning they’re very consistent across the entire cohort.
There’s this awesome quote from Einstein, it’s, “If I had 60 minutes to save the world, I’d then spend 55 minutes trying to figure out what’s wrong with it.” That’s basically what we said to Greenwell, which is, let us map out what’s going on in these conversations. And then, what we want to do after we’ve mapped that out is develop a new strategy. How can we make these conversations better?
We did all that, and it took three years, and at the end we were like, “Now, what do we do?” And it was clear that if we’re going to do anything to change practice, we need to get that out there for surgeons. We had this federalist papers idea that, if we kept just sort of writing little pieces, that that would be a way to get the ball rolling was surgeons. The strategy was to write a short enough piece that a surgeon would read, but to give it a bite-sized, just this piece, just learn this and try that in your clinic and see if that works better. That was the strategy, and we’re very grateful for JAMA Surgery for publishing all four of the papers. And to Jackie and Bob, who are actually the other two people in our writing group.
Eric: And Justin, can I turn to you? I’m going to go farther back in time. You’re a linguistic and medical anthropologist.
Justin: I am indeed.
Eric: How the heck did you get interested in that?
Justin: When I did my PhD, it was actually just in linguistic and cultural anthropology. Believe it or not, it had nothing to do with medicine or even health. And through a somewhat circuitous process, I wound up in academic medicine, and I wound up doing work in the perioperative space, broadly construed, and realized that there wasn’t a ton of work, at least in clinical journals, where people were doing close immersed ethnographic work on things like surgical consultations, except for people like Gretchen.
And that’s how we connected. It was that, separately, we were doing pretty similar work and arriving at similar conclusions, many of which I’m sure we’ll get into, but the most high level one being that the way some of these issues of clinical communication were being portrayed in classic literature and bioethics, for example, around informed consent and medical decision making, it just isn’t the way things were planning out on the ground. I published a paper a few years back, and Gretchen and I got into contact, and we’ve just been working close together ever since, really.
Eric: And going back to that PCORI study, how do surgeons talk about this? What happens in real life?
Gretchen: Yeah. The patterns are so robust, you would think that we were all taught the same way. And I think, if you talk to surgeons, they’ll be like, “Nobody taught me to do this at all, but somehow we all do the same thing,” which is to start with this long conversation of, “Let me tell you about your problem.” I am really good at drawing an aneurysm upside down to show what an aneurysm is. And then, the next thing we talk about is, “Let me describe the operation I have to fix it.” And sometimes, we’ll pull out angiograms or CAT scans. We’ll say, “This is your liver, this is a tumor in your liver, and I’m going to take the tumor out.” Or, “There’s a blockage in your blood vessel and I’m going to go around it.” Or, “I have your aneurysm. I’m going to put a stent inside it.” But the bottom line was that, “Here’s your problem and this is the operation I have to fix it.” And then, all of us have been taught to disclose risk. So the subsequent part of the conversation is, “Well, there are these risks to surgery,” and when we’re enthusiastic about surgery, we’re like “bleeding, infection, stroke, cardiac attack, death.” When we’re worried that surgery is a bad idea, we’re like, “It’s really risky, and there’s this chance of dying.”
And then, the conversation is like, “And do you want it?” That’s pretty typically how it goes. And we were finding that in some of this data, when surgeons were very reluctant to operate, they would put surgery out as a choice. “We could do surgery, we could do these other things,” and then, very surreptitiously, push patients into the place that they thought was better for them.
For example, they had some guy who, they’re talking about cystectomy in an 87-year-old guy, he’s like, “Yeah, I could do the cystectomy. I did it before and this guy, he was 85, but he was climbing Mount Everest.” Somehow, there’s this signal that the patients and families had to pick up that maybe the surgeon wasn’t so enthusiastic, or if I just dump risk on them, maybe they’ll say, “I don’t want this.”
Eric: So kind of nudging people towards a particular idea or a plan, but not explicitly saying that?
Gretchen: Absolutely. And I think it came out of this good space. I think the two spaces it comes out of, one is informed consent, which is this idea that people need to have an understanding of their disease and treatment. They need to know the risks and the alternatives, and benefits is this subtle notion that your problem will be fixed without truly stating what that would accomplish for the patient and family.
This understanding piece actually takes up an enormous space in this conversation, and the kinds of things you would want to do to figure out whether surgery is right for patients and families is deliberate, and yet, the conversation has really been taken up in this other very technical space where, obviously, surgeons are really comfortable. I think the choice thing, this offering non-choice choice, that comes out of this notion of shared decision making. I have to offer choices even if I think one of these choices is a really bad idea. I think that’s why we see pretty robust patterns, because we’re taking it from these larger frameworks that people have been taught somewhere along the line, and it just plays out that way. But surgeons, they just love drawing pictures or showing angiograms or, “Let me show you where the cystic duct is. I’m going to … ”
Eric: Is that true for you, Alexis?
Alexis: Yeah, I was just going to say, I remember I drew a picture on the whiteboard during rounds the other day. I guess I’m learning how to be a surgeon. [laughter]
Eric: I saw that picture. This is the esophagus.
Alexis: But I actually wanted to ask, seated at this space in between surgery and palliative care, I’m not yet done with my surgical residency, and now, I’m a palliative care fellow. And in palliative care, we talk so much about functional status and goals. And I saw, in my surgical training thus far, exactly what you’re saying. When surgery seems like a good idea, it’s almost a foregone conclusion, and then, the risks are just tacked on in one breath at the end for legal, I guess, purposes. I’m just wondering, how do we get surgeons, and maybe, how do we teach surgical trainees to move away from this fix-it mentality into the space of deliberation where deliberation is actually invited and prioritized in the surgical consultation?
Justin: That’s probably the million dollar question. You mentioned this term, fix-it. There’s been concern, dating back at least, what? Two or three decades now, Gretchen, about fix-it language not only in surgery but in a variety of clinical spaces, which really refers to language that portrays illness, really, through a mechanical model. You have a blockage, we need to go around this and attach this to this, a repair, a fix, and so on and so forth. The concern being that there’s a set of connotations with that language, that this is a problem, that I can just go in and repair, and then, that will be the end of the concern. And also, the connotation that this is a sort of isolated problem, like something going wrong in your car, but everything else is fine, so once we fix this one thing, everything will be running new.
There’s two sides of things, I think, from the way that Gretchen and I have talked about it. On the one side, you can have a clinician who really uses a lot of fix-it language and everything is tacitly conveying that we’re going to get on with things and repair this and move forward, and the other side where, “Okay, let’s try to step back and deliberate.” And I think a lot of clinicians are trying to get to that other side now, but it’s very tricky to set that up so that the deliberation can actually be effective so that patients and families actually feel that they have something to say.
Gretchen: And to your point, Alexis, I think it’s really important that, when you structure it for surgeons, it has to feel like something they can do. And I think that there are a lot of really amazing skills that people in palliative care have and the surgeons are like, “I can’t do that.” Starting with people’s goals, that is a non-starter for surgeons. And I don’t want to put surgeons down. I think, if they got palliative care training, many of them could do it, but that’s a lot of training, and they have some other things that they need to do.
Trying to find a way to explain it to them so that they can do their piece of it, it is really contextual for surgeons. Every time I walk into a patient’s room, it’s the same decision for me every time. Surgery, no surgery? Every time. Pre-op, post-op, I’m always thinking, should we be doing surgery or should we not be doing surgery?
What I need to navigate with that patient and their family, is it valuable to you? And are the burdens of this therapy something that you can tolerate? And I think that, then, you can start breaking that down for the surgeons without having to start with, “What are your goals?” Because I think that that is just too much to ask of them. Getting to your point of, what can you teach a surgeon in order to make this better? It has to be really precise like that.
Eric: So there … Oh, go ahead, Alex.
Alex: We have to link to the YouTube video about “There is a fracture. I need to fix it,” right?
Alexis: Oh, yeah. It’s a good one.
Alex: We have to get you that. It’s one of the best parodies of this situation ever.
Eric: What’s that video?
Alex: One of the reasons …
Gretchen: I will tell about the video, because I love that video.
Alex: Please tell the video.
Gretchen: If you need to see it, it’s called, Orthopedic Versus Anesthesia, and the blue stripey bear is the orthopedic surgeon and the red stripey bear is the anesthesiologist. And the blue stripey bear says to the red stripey bear, “I have a fracture. I need to fix it.” And the anesthesiologist says, “Where is the fracture?” And he says, “It’s in the emergency room.” They go on from there, and it gets to the point where he says, “She had something I have never seen before: a systole.” Of course, the poor anesthesia bear is just spinning. And all good humor, it’s good humor because it smacks in some way of truth. And I do worry that surgeons can get very singularly focused on the lesion. And when they talk to patients and families, it’s a pretty easy sell. This is broken, and I have this thing that will fix it.
The problem is, that’s actually not a very good narrative for nearly everything we take care of in healthcare. It’s awesome for a femur fracture, maybe it’s great for appendicitis, but it is not great if you are a vascular surgeon because, yes, I can go around the blockage, but I am not changing your vascular disease or your multiple comorbidities, and I’m really saying absolutely nothing about whether I may or may not help your life. All I’m doing is isolating you into this transactional problem, and that actually doesn’t help patients and families deliberate about whether it’s valuable to them. And they can make mistakes about what surgery might do for them because it sounds so amazing. It sounds like you’re going to fix me by dealing with my blockages, and then, they put their own goals on the operation because we haven’t been explicit about what those goals are.
Eric: This sounds, I’m going to go now into, because you have four articles with four clear recommendations, practical recommendations, what surgeons can do. This feels like it’s really the second article in the series, titled Focus On The Goals of Surgery. I adored this article. I actually think all four of these apply to medicine too. They apply to everything.
Gretchen: They do. Eric, I’m standing in my lane on this. I just want to be really clear. I have not done the intellectual exercise to go that far.
Eric: I have been mentioning this article in particular for the last two podcasts that we’ve done on communication just because I really adored this one in particular, which is focused on goals. Two reasons. One, on our very first podcast on miscommunication, Abby actually brought up, she went in with her dad because her dad had a retinal detachment, saw the eye surgeon, eye surgeon did the surgery, and the eye surgeon came out that it was a resounding success, no complications and everything was great. So dad asked, “Oh, great. When can I see again?” And he said, “Oh no, you’re not going to see again.” And they were like, “What?”
Alex: So he said, “Yeah, I reattached the retina, but you’re not going to see again.”
Eric: So the surgery was a success, but it didn’t meet the patient’s goals. And I love it because it made me think about this article, and particularly, you said, “There are four things that a surgery can do.” What are those four things, Gretchen?
Gretchen: It can help you live longer. It can help you feel better, which is a pretty big bin of feel better that also means function better. It can help prevent disability, or it can make a diagnosis and that’s it. Surgery does nothing else. When we look at our data, we find that, half the time surgeons don’t mention a goal at all, and usually, what they’ve said is, it’s going to fix the problem, and about 25%-
Eric: But fixing a fracture is not the goal?
Gretchen: Well, it’s my goal as your surgeon, I would like to fix your fracture, but if it doesn’t help you feel better or walk better, and then, sometimes, it might even prolong your life, then, why would we do it? How does that help you to make this lesion I see on CAT scan or angiogram or visually, make it look better, and it doesn’t change your life? That’s a lot to go through to not actually have something that’s valuable to you at the end.
I worry that we don’t connect the dots. I think, sometimes, surgeons will say it will cure your cancer or control your cancer, which sounds awesome, except those are intermediates. Those are a means to an end of living longer and/or feeling better and sometimes preventing disability. And I think that we don’t connect those dots for people, and sometimes, you’re not going to die of your cancer anyway because you have other problems, and sometimes, the cancer is going to kill you regardless of whether we take it out or not. So to not be precise about those goals, it seems to me that it’s almost a bait and switch. It is really easy to convince somebody to have an operation to take their cancer out, but if we’re not achieving those goals for them, we’ve really done them a huge disservice.
Eric: Yeah, I love that too. Because I do think it applies to medicine, CLL, a good example. Will it make people live longer if you treat it, be more functional or feel better treating prostate cancer? Really thinking about this as we think globally.
Gretchen: I think some of the thyroid cancers are a really good example of that. I think prostate cancer is a good example. I think some really devastating cancers are a good example of that too. People are like, “I just want it out,” and I’m like, “Well, you just want to live longer. I get it.”
Eric: And specifically, if my goal is, I want to cure my cancer, you’re actually saying that’s actually not the people’s goals. They want to live longer, get to their child’s birth …
Gretchen: And I suppose they want to live their life as though they didn’t have cancer.
Eric: Yeah. Return to normal-
Gretchen: But simultaneously, that’s, “I just want to live. I want to live my life. I want to live my life in this way I thought it was going to be long.”
Alexis: And I also just am reflecting too, as much as surgeons come into the room with a idea of a problem and a solution, I think patients do come into surgical consultation often expecting to be told they need surgery and in that mentality as well. Just to reflect back that I think it’s both moving patients and surgeons into that space of deliberation and focus on the four things surgery can do.
Gretchen: Yeah, a hundred percent, Alexis. I see a lot of patients with varicose veins, and you might imagine that they come in a little scared. There’s all these commercials on TV about Eliquis and clots and all this stuff, and they’re very afraid that their varicose veins are going to harm them. Not only do I have to say, “The only reason to operate on your veins is to help you feel better,” I also need to say, “They’re not going to cause you to lose your leg. They’re not going to shorten your life. They’re not going to cause blood clots.” People, they’ve been told they have a problem, and then, all this stuff gets heaped onto that problem, and we have to be really precise about what it is we’re trying to accomplish for them. Otherwise, when I was younger, I think I’ve probably operated on several people because they were afraid of their varicose veins without really connecting the dots for them about whether surgery was valuable to them.
Eric: Well, does that argue that maybe there’s a fifth goal?
Gretchen: Oh, no. I can’t rewrite the paper, Eric.
Eric: Looking better.
Gretchen: Looking better. I would put looking better under feel better.
Gretchen: Like I said, it’s a big thing.
Eric: Psychological wellbeing, feel better.
Gretchen: Yeah, I’m totally cool with looking better. That’s a great goal of surgery, but-
Justin: There’s been many debates about these categories with Mr. Bob Arnold. He will always bring up what he thinks is an exception, but then, Gretchen will get it into one of those four.
Gretchen: I won. I won the debates, but I’m not sure I’m right. But I’m happy to have won.
Eric: And when you see this, as an anthropologist, Justin, how do you think about this, this fix-it and this approach, and how we should approach this differently, especially surgeons?
Justin: A lot of the way I think of it comes from my background as a linguistic anthropologist, and that’s something I’m trying to work through now, apply these lessons on a broader theoretical level. The central approach of linguistic anthropology is to look at how language functions, not just what language means. Fix-it, for example, really shows you that language can have these functions that don’t come directly from what’s being said per se.
People think of the phases of a typical clinical consultation. Well, there’s this descriptive phase where there’s a verbal and physical examination and the conditions discussed, and then, procedures are discussed. And then, there’s a deliberative phase, and then, there’s a next steps part. But all of that assumes that what’s being achieved in each of those phases is just what’s being described, what the language is referring to. When there’s all these connotations that go along with how we say things, so just in the way the surgeon is describing the nature of the problem and drawing a little, sketching out a little image, that can lead into all these implications for patients and families. Their minds are running the whole time while that’s going on. I think a lot of this is trying to help clinicians to think about, how might patients and families be reading into what’s going on here? How are they reading between the lines?
Gretchen: It’s so mechanical. I do worry that, when we think, especially as a vascular surgeon, you see all these things. You see an aneurysm, you see a blockage and everybody’s like, “Oh, it’s mechanical. Just change the mechanics.” And you’re like, “But this is the person who has a physiology. All of the physiology works together. They have their functional status before we started.” It’s really easy to break it down into this mechanical space. And I think patients and families to think of it that way. It’s very comforting, in many ways. And yet, it totally undersells what it is to operate on a human, which is a much, much bigger endeavor than, “Let me just put this back together the way it was supposed to be the first time around.”
Eric: Yeah, I think, again, medicine, there’s a lot of similarities, even how we write our notes, it’s problem based. You have a problem, this is your fix for your problem. Problem, fix for the problem. You may not see the big picture, like treating somebody with advanced dementia by hospitalizing them and starting antibiotics for aspiration pneumonia and potentially a peg tube. Always trying to fix a problem without seeing the big picture, or is it aligned with their goals?
I also get the sense that part of this is, and Justin, you were alluding to, is that, when we’re having these discussions, there’s a lot of focus on the technical nature of the problem and the fix and not so much on the deliberation, which was, for me, it felt like it was the third article in the series, Promote Deliberation, Not Technical Education. Is that what you were alluding to, Justin?
Justin: Yeah, that’s part of it. I think that harks back to something Gretchen was saying too, which is, the whole impetus for the concept of informed consent ends up putting a very heavy stress on the risks piece and all the downsides that can come with a procedure, and really making sure everyone is aware of those. Then, there’s a confluence of that emphasis with the tendency of surgeons to really like the technical component and really enjoy showing their expertise in that technical component. Also-
Eric: Is that right, Alexis?
Alexis: I would say so. It feels good to know something and feel like you can help.
Justin: Yeah, I think there’s a true kind of enjoyment there. And also-
Eric: I do like that technical argument and the technical paper, again, the third one in the series, because you start off with a plumber. The plumber comes to your house. They can spend a half an day, was it a toilet was broken? Talking about half an hour about what they’re going to do to fix your toilet without really telling you much about whether or not you should do it, or how much is it going to cost, or the things that are important to you. But in some ways, I actually want a little bit of technical knowledge because it actually makes me feel a little bit comfortable that the plumber knows what they’re doing.
Justin: That was precisely what I was going to say next, is that a little bit of that may be necessary, but if your plumber talked about it for 30 minutes, you would probably start to feel a little weird. But there’s something about the medical setting where a much greater degree of that is allowable and stressed.
Gretchen: It’s as if the rationale-
Alex: If the plumber said, “What are your goals here?”
Eric: I may say, “Fix my toilet,” but that’s actually not my goal. It’s, when I poop, that it goes down the toilet.
Gretchen: Well, there’s that, but really, it’s the goal for your house, not for your toilet, and it’s goals around what you’re willing to spend and how well you want your toilet to work. And it does seem to me that, if we’re just talking about what I’m going to do to change your toilet, we’ve missed that conversation about, how well is it going to work? How long is it going to last? And how much is it going to cost you? That’s the space that we need our experts to navigate with us, even if they have this technical space that allows them to understand how to best support our goals.
I do think this space around being very transparent about what the disease is or what the operation is comes from a good place, which is, “I want to tell you what I know,” but we’re never going to reduce that information asymmetry, and I would suggest that it’s more about curiosity. I think Justin’s right, there’s a little bit of performative, “Let me show you how smart I am, so you’ll trust me,” but I worry that, when we don’t have the conversation patients and families need, they trust us less. And I think, once we’ve decided to move forward with surgery, it would be completely reasonable to say, “Do you want to know what I’m going to do inside of you? Or do you want to hear more about the operation?”
Because once you start doing all that stuff at the beginning of your conversation, you realize that the conversation flows way better. You have a lot more confidence that we’re doing surgery for the right reason. And then, there’s this little group of people who are like, “Can you just explain what you’re doing?” And you’re like, “Sure, I’d love to.” I think it’s not, don’t do it. It’s, don’t use it to convince people that surgery is what is best for them, because I think that’s what we’re doing. It’s as if those facts are somehow neutral, but they’re not. We’re building a model for them that doesn’t actually explain what’s going on.
Justin: Yeah. The trust piece is interesting. You may disagree with this, Gretchen, but in my experience, having done studies where I’ll be talking to a patient and a family, and then, the surgeon will come in, and then, I’ll talk to the patient and family more after they have the consultation with the surgeon, I feel like there’s more trust in the very short term when there’s a lot of technical stuff because there’s a certain sort of dazzling that happens where the surgeon walks in the white coat and displays this tremendous amount of technical knowledge.
But I do think that, then, in the long run, because maybe the amount of preparation for what’s actually going to happen in the recovery process and what’s actually going to be achieved and so on and so forth, it either hasn’t been really conveyed, or it doesn’t match with what the patient and family has just read into what the surgeon said. That’s where, I think, it takes a hit, on the trust aspect.
Alexis: Yeah. I just was going to jump in and say that I think, in surgical training, the focus is, obviously, on the technical aspects and how do you do the surgery and how do you manage somebody both pre- and post-operatively. And a lot of times, that period of time ends when they leave the hospital or after their follow-up appointment, and consequently, we don’t know that much, at least as trainees, about functional status and what is it going to … You say, “Take a couple days off work,” but what does that mean? What are you going to be doing during those couple of days?
And I think one thing that I’ve tried to do is just to try to think a little bit more about function and simple language. And it sounds like that’s also part of the deliberation is really bringing in the functional status component to, should we operate or not?
Gretchen: Yeah, for sure. I think, ultimately, the deliberation is between what we’re trying to accomplish, the goals of surgery, and then, the downsides of surgery. And Eric, you’ll have to remind me what the fourth paper is called because-
Eric: Present Downsides, Not Just Risk.
Gretchen: Yeah. This paper we submitted was called The Bin Of Bad Shit Has Three Layers. You are not allowed to say “shit” in JAMA.
Eric: You can say it on our podcast, though.
Gretchen: Thank God it’s allowed on GeriPal.
Justin: It’s like a three layer dip. The bin of bad shit has three layers.
Gretchen: It does say The Bin Of Bad Stuff, so hopefully people can put their own words in there. You’re also not allowed to submit … You’re not allowed to publish a picture of a dumpster, which we also sent in with the Bin Of Bad Shit paper. I do think it’s a really helpful way to remember what the downsides of surgery are, that there are three layers to the downsides of surgery, and it’s one big bin of bad shit, because that’s what we’re trying to do. Is it worth it to you, recognizing that there is a fair amount of burden for this therapy? And the first thing is that you have to have surgery, and you have to understand what the expected course of surgery is even if things go well, and that’s so different than how we conceptualize it right now, because as surgeons, we conceptualize the downsides of surgery as risks, bad things that could happen.
But if you have surgery, you’re definitely having some bad things happen to you because it hurts to have surgery. Even if you have a little tiny operation, it still hurts, and you still need to recover from it. That has to be part of your calculation. And I worry that we’re like, “Oh, it’s [inaudible 00:34:24]. I’m going to send them home and they’ll be fine.” Well, we should probably tell them that they’re not going to feel good for a few days. And honestly, if we’re going to take somebody’s esophagus out, we need to tell that story too. You’re going to be in the hospital for a week, you’re going to feel like crap for, probably, the next two months. It is really going to be hard to recover from this. And then, once you’re recovered, once you’re fully recovered, if your stomach is now your esophagus, you are never going to be like you were before. And that’s not a risk. That’s everyone. Everyone who has that operation has to go through that.
Eric: Yeah. Linguistically, the difference between risk and downsides is, risk, there’s a chance of not getting it. Downside is, we should plan that. You’re going to get this.
Justin: Yeah, I think it’s been shown pretty well at this point that, if things are phrased in terms of probabilities, people have the ability to think that they’re going to be on the good side of that probability.
Alexis: Optimism bias.
Gretchen: Yeah. There are bad things that could happen which are different than the bad things that do happen. That’s the second layer of bad things that could happen. And then, the third layer is that, “Hey,” this is maybe your retinal example. Surgery goes great, but we fall short of your goals. Your back surgery went beautifully and you’re all nicely recovered and you got through all these burdens, and you still have back pain. We did this beautiful Whipple operation. You recovered miraculously in two months. Six months later, we get a CAT scan and the cancer’s back.
It does seem to me that that’s the deliberation we need between what we’re trying to accomplish and what the burdens of that therapy are. And I hate being the word police. I don’t love just changing all the words, but the problem is, all the good words were taken, so we had to come up with some new words and some new constructs to try and rebuild this conversation. We went with “downsides” and we put this piece about risk in the second layer of bad things that could happen.
Eric: I also get a sense, because we’ve had Gretchen on before, talking about best case, worst case planning and scenario planning, in particular, and modeling to that on our website. I get a sense, Gretchen, too, that when you talk about downsides, you’re telling a story. You’re not just giving percentages, numbers, but you’re telling a story of what would it look like. Because you actually did that just when you were talking about risks of what things look like. Is that right?
Gretchen: The first layer, that’s exactly what it is. And please don’t tell people that’s the best case scenario, but that’s actually what it is. It’s the expected course of what your experience of surgery would look like if things go well. I would say, the second layer, it is very reasonable to bring back some of that probabilistic language and say, “There’s a risk of stroke, there’s a risk of heart attack, there’s a risk of death,” and you can attach the probabilities to that.
And I think that’s important to know, but there’s actually three other things in that second layer of bad things that could happen, and one is a major change in functional status, and I think that that is something that many people would be absolutely willing to trade off, but they would need to know that in advance. They’d need to do the calculation themselves. If you take out my right colon to extend my life from colon cancer and I end up with chronic loose stools, that actually feels like a very reasonable trade-off to me, but I would want to do that calculation in advance so afterwards, if I’m having this unpleasant outcome, I’d be like, “Yeah, but I got to live longer.” Did that get at your point, Eric? I don’t feel like I have answered your question. I’ve gone down some tangent.
Eric: Yeah. And I guess, the big picture, so far, we’ve talked about talking goals, what’s important to them, not just the problem. We’ve talked about deliberating. We’ve talked about the dumpster, the downsides. As we’re deliberating, we’re talking through this. I can also imagine, the way you frame things, you can make implicit recommendations as far as how big of a dumpster this is. Or that was it the bad stuff dip or bin or-
Justin: Bin of bad shit.
Gretchen: The bin of bad shit.
Justin: The bin of bad shit. Or you can make it sound pretty good. And that came to the first article in the series, which feels like, to me, it’s about making the implicit more explicit when we’re talking about-
Alex: Say what you need to say.
Eric: Not again, I’m not trying to get Alex to sing. No, stop! Stop! Stop. It is not your cue.
Alexis: Not yet.
Eric: How does this all come together? Does it come together with nudging people towards a particular direction or making an explicit recommendation?
Gretchen: It does come together, but we have not gotten that paper published, but you are right, that the first step is a step called Show Your Cards. Again, the title got a little bit changed when we sent it in, but it was called Show Your Cards. And the idea is, by being explicit upfront about what the surgeon’s opinion of how best to help you, that that would be a starting point that, then, you could deliberate with the surgeon about, and the surgeon wouldn’t have to push so hard on the side, to push you implicitly towards what they think is their best interest. They could just state that upfront and say, “Hey-
Eric: Wasn’t it published? Because I read that. Wasn’t that the Provide Your Opinion, Don’t Hide It?
Gretchen: Yes, that’s published, but the piece where we put all these things together is sitting out there someplace which I’m not going to disclose. Yeah, the idea would be that you would start the conversation by showing your cards, so you could be explicit about it, and then, deliberate in a way that would allow people to agree with you or disagree with you. And I think that that is a completely reasonable strategy, as long as we go into it with this open mind. “I’m going to tell you where I am, but let’s figure out where you are.”
By telling people where you are, you would start by saying, “Typically, we do surgery for this,” or, “I think surgery would help you.” Or you could start with, “I’m worried surgery’s a bad idea,” or “We don’t usually do surgery for this.” Or you could say, “Hey, there are really two ways to treat this, and I’m undecided about how best to help you, so we need to talk about which one’s right for you.” And I think the way that gets played out now is people say, “Well, we have a choice and we have to choose between these two things.” The patients or families are like, “Why are you making me choose?” And it might be better to start off and be like, “Well, I’m not sure what’s right for you, if that’s really where you are,” but to hide your opinion from the start, and then, push people towards the opinion, that seems a little devious to me.
Eric: Yeah, it feels like we all do that too. If you’re in the ICU, you don’t think somebody should get CPR, you may talk about all the bad things that will happen if you get CPR, and then, you ask, “So, do you want CPR?”
Gretchen: And then, you spend an hour arguing out of it after they said yes. Right? Whereas a stronger conversation-
Eric: A sleepless night with moral distress.
Gretchen: Right. But it might be better to start that conversation by saying something like, “We don’t usually do CPR in people who are actively dying because it just prolongs a dying process. I want to make sure that’s okay with you.” How is that violating someone’s autonomy? And how is it helping someone’s autonomy to say, “Hey, do you want this thing that I think is really bad for you?” To hide my professional opinion, does that help?
Alex: Alexis workshopped a couple questions with us yesterday, and we helped her make them even more challenging for you. Alexis, why don’t you?
Alexis: Sure. I think one of the things that comes to my mind is words, and maybe, Justin, this one is for you, but when I get my first real job, is the right way to come into a consultation, exactly what Gretchen was just saying, are those the words that you’d recommend surgeons using right off the bat? We know it’s difficult for surgeons to ask right upfront about goals, but what should surgeons say?
Justin: Yeah. I think what Gretchen just described as a result of clinicians trying to thread the needle between paternalism, but also wanting things to happen medically that they think are the appropriate courses of care, but doing so without coming off as overbearingly paternalistic. And certainly, we’re not saying that clinicians should be paternalistic, but the solution is not to hide your opinions and to walk patients backward into the courses of care that you think are appropriate. As Gretchen was saying, that’s not transparent and that’s not, probably, the best way to really empower patients to be able to discuss things.
One strategy, as I think you’re alluding to, Alexis, to get away from a paternalistic mode, would be, instead of coming out and saying, indicating what your stance is as a clinician, would be to start the conversation with, “What are your goals, basically?” And just open the thing totally up. Gretchen can say what her opinion is on this, maybe it differs slightly from mine, but I think we both agree that that’s really not the best way to start things, and that’s why we have recommended this laying your cards on the table, because there needs to be some sense of the situation that’s given to the patient and/or family. There needs to be, we call it a platform for deliberation.
Having a conversation about goals, broadly speaking, when you haven’t even laid out what the possibilities even are leads to the same kind of backtracking, because then, what if the patient says, oh, I want X, and X isn’t really possible? Okay, now we’re going …
Eric: It’s also like a family meeting where we don’t just start off with, “What are your goals?” We make sure that we talk about illness understanding and prognosis. You got to paint the picture of where this is coming from, because our goals would be different if we had five years to live versus two weeks.
Gretchen: And I think there’s some real reframing, and you all can tell me how that works as a palliative care clinician, but it seems to me like, if I have a patient who comes to my office and I start by saying, “How would you like me to help you?” And they say, “I just want my aneurysm fixed,” it seems to me like what I need to do is reframe that goal. What we’re talking about when we’re talking about your aneurysm is helping you to live as long as possible.
And if I think that surgery is actually either going to shorten their life or they’re not going to live much longer, so it’s not actually valuable to do surgery on their aneurysm, sure, I can make that aneurysm look better, but I haven’t addressed any goal that they actually have because that notion around fixing my aneurysm is actually a surrogate for something that actually matters more to them than just making the inside of their CAT scan look so much prettier on scan.
Justin: Alexis, I have a question for you. Is this pie in the sky? You’re in the middle of surgical training right now. Is this all pie in the sky? Or can you imagine your surgical teachers helping you learn this language? And feel free to turn it to them. How do we get there?
Alexis: Yeah, I can definitely imagine some people saying, “Did you see those four articles? Those were great. Let’s work on it.” Or the scenario at the very first bit, “Why are we doing this operation? No, really, why?,” drilling down. And then, I can also see some of my attendings saying, “Who cares?” So yeah, I don’t know what you guys think about bringing it into surgical education, and partially, it’s also about culture change in some ways too, in surgery. And I would also add, maybe a little bit about patient satisfaction and that whole beast.
Gretchen: Yeah. I gave a talk in Florida recently and at the end of the talk they were like, “So what do the University of Wisconsin residents get for communication training?” And I looked at them and I’m like, “Nothing.” Nothing. It was so embarrassing.
My new theme song is, you know that South Park episode where they think they want to make a profit by stealing underpants, but they actually don’t know how to get there? It’s this diagram: phase one, steal the underpants. Phase three, make a profit. And then, phase two has this huge question mark. We’re in the stealing underpants phase. We’re not planning to make a profit. But Alex, to your point, that would be the goal. That is the goal, is to change what surgeons do. And these four papers were written as our shot across the bow to say, “Hey, just listen to this. See if you could do one or two of these things in clinic. Just try it. See how you like it.” No, we are not changing the world with four little papers, but I do think it’s a shot across the bow. And I think, to Alexis’s point, yeah, we need some fundamentals of communication in surgery training and we need a program to do that. And we’re still stealing the underpants. That’s all I have to [inaudible 00:48:36]-
Eric: Let me ask you this question. Even bigger question. Because I read this brilliant article, you may have heard of it before, Surgical Overtreatment And Shared Decision-Making. And the point of this article, I really loved it. It said, “Care is not driven by pivotal choices within discreet clinical interactions,” arguing that just focusing on patients or surgeons having shared decision making is just not enough. Have you guys heard about this article before?
Gretchen: It’s possible. [laughter]
Justin: Familiar phrasing.
Eric: For our listeners, Justin was the lead author…
Gretchen: It might be the first piece Justin and I …
Eric: … and Gretchen, I think you were middle author on it. We’ll have a link to it on our site. Is this all for naught? Because the system is perfectly designed for the results it gets. We know hospital culture influences how we care for our patients. How important is this?
Justin: I don’t think it’s all for naught, certainly. I think there are a variety of angles you can take, and there’s a certain amount that you can do within the exam room, so to speak, and within that conversation. But I think it’s artificial, as we’ve already shown in this conversation, to talk about that as a isolated event. You have to applaud it in the broader patient trajectory, how it relates to the recovery process, but also, how it relates to why they got there, what was their interaction with whoever referred them to the surgeon? What is their interaction with any other information that they’ve gotten about their predicament? I don’t think you can really separate the two. I think, in order to come to a useful understanding of what happens in that interaction with the surgeon, you have to think more broadly.
Eric: Yeah. And the incentives for surgery, including financial incentives to do things, and the incentives for the hospital, recognizing that we’re all these little pieces in this big system, a little cog in a … But it sounds like what you’re saying is, we should still say what we need to say. [laughter]
Justin: Well done.
Alex: I’m ready. I was waiting for it. I knew there was going to be a tie in any second now.
Eric: Thank you all for joining us on the GeriPal Podcast. That was wonderful.
Gretchen: Thanks for having us.
Justin: Yeah, thanks for the invitation.
Alexis: Thanks for having me.
Eric: And thank you to all of our listeners for your continued support.