MacLean Keynote Address: Shared Decision Making and Other Strategically Ambiguous Shape Shifters

We just have a little bit of bright sun on the edges now for you. Um it's my pleasure to now um introduce uh Mark Anderson, MDP PhD, who is uh going to introduce uh our keynote speaker and the MLAN prize winner. Um so Dr. Anderson is the Paul and Alen Russell Professor uh dean of the division of biological sciences and the Pritsker School of Medicine and Executive Vice President for Medical Affairs. Um thanks Mark for being here this morning. >> Thank you Peter and uh welcome everyone to Chicago. It is a great pleasure to be able to participate uh in anything that happens in the MLAN center and particularly um particularly the MLAN prize. So, um, I I'm here, of course, to inter to to introduce the winner, uh, Margaret, uh, Gretchen Schwarzy, MD, MPP, FACS, who we are proud to claim as the winner of the 2026 MLAN prize in clinical ethics and health outcomes. Now this prize, the MLAN prize celebrates individuals uh who have made transformative contributions to the field of clinical medical ethics through scholarship, practice, leadership, and policy development. Dr. Schwarzy certainly exemplifies these characteristics. Dr. Dr. Schwarzy is the Mortgage Professor of Vascular Surgery at the University of Wisconsin Madison, just slightly north of here, and the chair of the UW Health Hospital Ethics Committee. Dr. Schwarzy is a vascular surgeon and clinical ethicist who focuses her scholarship on helping older adults with serious illness make the right decisions about major surgery. After studying mathematics and philosophy and graduating sumakum loud from KBY College, Dr. Schwarzy obtained her MD from Harvard Medical School and a master's degree in public policy from the John F. Kennedy uh School of Government. She completed the general surgery residency at the Massachusetts General Hospital and subsequently moved to Chicago where we are today. She completed a fellowship in vascular surgery and clinical ethics fellowship at the MLAN center. So there is a very great sweetness and arc to this story. Uh and since joining the faculty at the department of surgery at the University of Wisconsin Madison, Dr. Schwarzy has been able an an outstanding surgical uh surgeon ethicist and has been a remarkable researcher for over the past 20 years. Through her groundbreaking work, Dr. Dr. Schwarzy has analyzed the way that surgeons think about their decisionmaking and has described the important concepts of surgical buy in and the fix it approach to surgical decision-m perhaps most significantly Dr. Schwarzy took her careful observations and developed bestase worstcase observations uh conversations um as a communication tool um and framework for that that is still is widely used uh in pre-operative discussions about surgery throughout the US and indeed worldwide. Dr. Dr. Schwarzy successfully integrated her expertise in surgical surgery, clinical ethics, and health services research to lead one of the most well-funded ethics laboratories in the US. Her work has been supported by numerous extramural research grants from the National Institutes of Health, that's the NIH, the patient centered outcomes research institute, that's Pakori, and the Greenwall Foundation. Her scholarship has been published in some of the highest impact journals spanning surgery, paleative care and medicine, including the New England Journal of Medicine, Jamba Surgery, Jamba Internal Medicine, Annals of Surgery, Medical Decisionmaking, and the American Journal of Respiratory and Critical Care Medicine as well as the Journal of Pain and Symptom Management. In her work as a vascular surgeon and leader in clinical ethics and a prolific researcher, Dr. Schwarzy has had a profound and positive impact on the practice of medicine. She's been a role model and a mentor to many. To quote her colleagues who nominated her for this award, Dr. Schwarzy stands out as a leading scholar in medicine precisely because she listens deeply to the voices of human nature in her work, including those of patients, of families and clinicians, and approaches her science with empathy and intuition and love. Dr. Dr. Schwarzy's commitment to make things better for patients and families through her surgical practice, through her research, through her scholarship and leadership, and her mentorship makes her a perfect choice for the MLAN Center Prize for Clinical Medical Ethics and Health Outcomes. Today, she will present the MLAN Prize keynote address entitled, You can read that, shared decision-making and other strategically ambiguous shape shifters. Please join me in congratulating her on this well-deserved honor. Dr. Schwarz. All right. Thank you. Okay. Um, so this is just an extraordinary honor and I will be um admitting to feeling a little bit overwhelmed here. I'm also going to disclose that I'm not going to talk about bestase, worst case and I'm going to give a talk that's a little bit different than what I usually do. So I'm asking for a little grace here. Um it's a little biographical. It's a little theoretical. I'm hoping it's also a little practical. But I really want to talk about bioeththics as a field and think out loud about the kind of work this multid-disciplinary group does where it falls short and the efforts we can make in the future to broadly and routinely realize the goal of making decisions that are right for the patient in front of us. I also want to be clear that how I got to this point was not through a straight and clear line because I worry that the stories we tell sound like people's accomplishments were predetermined that we went from A to B to C and of course ended up doing this amazing thing when I suspect that's just an easy story to tell but it rarely reflects the stutters and stops along the way. So these are the things I reflect on when I'm struggling. If you're working walking around the hospital or clinic and thinking people, what are we doing here? Study that. Be sure to have empathy for your research participants, especially if they are surgeons. Um, [sighs] and when you're really what to really worried about what to do next, follow the data. Don't try to pigeon hole the data into something that it's not. The data will show you what to do. And then there will always be challenges. And I think this is why surgeons are actually pretty good at research. We're puzzle people. There is always a workaround. And this underpants thing, I promise I'll get to that. All right. So, when I was a surgical resident, this is how I spent my academic development time. And I will be honest that I did not like it. So, I thought academic surgery wasn't for me. And I finished my vascular fellowship here and went out to look for jobs in Flossmore and Neighborville. And Bruce Bruce Gwartz was the chair of surgery at the time and he took me aside and he said, 'You know, Gretchen, there are other things to do in academic surgery besides basic science. Stay here at the University of Chicago and find something else you would like to do in academic medicine. And so I thought about it, but I was pretty conflicted about what to do. An ethics fellowship felt like a good fit for me, but it seemed like a real gamble. I struggled to see how it would fit into the practice of surgery. I knew I was a good surgeon. Wouldn't it just be safer to go operate? But my father-in-law, Ruben Mezri, said, you know, you can always go into private practice and um you can always go into private practice after you do academic medicine, but it's very hard to go from academic medicine, from private practice to academic medicine. And he really encouraged me to do this fellowship. So I did the fellowship here at the MLAN Center and it was like all of these lights just came on things I hadn't thought about in years and what's more it seemed that all the interesting ethics ethical questions were in surgery and there were very few surgeons who were actually doing this. I think Peter you were probably the only person doing it at the time. So maybe there was a place for me in academic surgery. One really important thing I want to say about Mark is that Mark was very clear that when we did research whether it was normative research or empirical research, it belonged in medical or surgical journals and it wasn't just for the bioethicists. This was his vision that we were going to use bioeththics to make the practice of medicine and surgery better. So what happened next? Well, honestly, it was the MLAN Center conference that started all this and it was Michelle Bernaki who said, "Gretchen, why is it that surgeons have such a hard time withdrawing life supporting treatments on their post-operative patients? Is it just their mortality statistics or is it something else?" And I'll be honest with you, it was such a cool question because people seem to think they knew the answer, but that answer didn't sound right to me. I just didn't see surgeons running around with mortality statistics on their backs talking about it all the time. So I did this very tiny qualitative study where we ran around the state of Wisconsin and we interviewed surgeons about withdrawal of life supporting treatments and we were able to uh characterize this phenomenon of surgical div buyin and understand why these post-operative conflicts occurred. They told me we agreed upon this in advance. Well, I was hooked. I love the idea that we could ask an ethical question and then do empirical research that would allow us to understand it in a way that was much different than some of the normative and theoretical work that we were doing in the field. So, what happened next? Honestly, I really didn't know what to do after this study. I just knew that I wanted to do more research. And Jeff Matthews actually said to me, "Don't you want to know what the surgeons are saying that makes them think that patients have bought into the surgery?" It's like, "Great idea. Follow the data." So that's what we did. We started putting audio recorders in clinics and yes, we were able to understand why surgeons thought that they could b that patients had bought in. But we saw a lot of other things. Now in 2026, we have more than a thousand conversations between surgeons and patients talking about surgery in our library and it really shows a lot of opportunities for improvement. There's this great great quote which I think is attributed to Einstein which is if I had 60 minutes to save the world, I would spend 55 minutes trying to figure out what is wrong with it. Which I take to mean that just throwing solutions at the problem isn't likely to be successful. To make things better, we need to understand the things that are going poorly. So this is what I want to talk about today to consider where and how empirical work fits into bioeththics and why it's so important. I want to be clear that I don't have all the answers and my solutions may not the be all and end all, but I want to use some of our work as an example of what bioeththics can do and to point out the work that needs to be done. So here goes. Please bear with me. All right. So in bioeththics, we start in this theoretical stance thinking what to do within the context of the patient patient doctor relationship. But this needs to be operationalized because it doesn't matter how great the theory is or how insightful it may be about the needs of the patient or other stakeholders. If we can't operationalize it, the patients won't get it. But then it becomes clinical practice. What is prescribed evolves and becomes patterns of usual care. We might call this the vernacular case. And we check to see that clinicians have done this. And you all know what I mean because probably just like me, you have an inbox in the EMR that is full of all your delinquencies. So we're definitely checking to see if you got it done. But I think the gaps in the work of bioeththics are where this arrow here. It's another evaluative space where we don't examine whether what we have operationalized is performing clinically as we intended because if it doesn't play out clinically as we thought it would, we cannot affect the change that we dreamed about in the theoretical ideal. So let's look at this in another way and I think it's helpful here to remember that bioeththics is multiddisciplinary and how that's a strength. We do the normative work in philosophy or law or psychology and then it needs to be operationalized and there are a whole host of people who do this. We might call them lawyers or health services researchers or policy makers. And then we evaluate the performance of those strategies. So thinking about this empirical research to reconsider whether we have operationalized our normative hopes and aspirations well we might think about robust social science methods like ethnography or other observational tools that allow us to consider whether the theory and the practice actually work for patients and clinicians. So, here's what I'm saying about this translation between strong normative work and patterns of usual care. Something you might recognize, informed consent. And we might have different stories about where the normative work came from. Most of us will recognize Justice Cordau's assertion that every human being has a right to determine what shall be done with his own body. And then over time, it was operationalized into a strategy might recite call the elements of informed consent. And certainly our clinical performance of that strategy gets evaluated by collecting forms and holding clinicians accountable for this procedure of informed consent. But really the rest of this talk is going to be this arrow going backwards here. the need for empirical work to understand if the way we have operationalized informed consent is actually doing what we want it to do in be part because the problem might be here between the operationalizing and evaluating it but it may also be that we just operationalized it poorly and we need to figure out those things so we can move forward with the aspirations that we're striving for. Okay, so that's the setup. Um, and maybe you're really wondering where I'm going with this now, or if I've forgotten the title of this talk, shared decision-making and other strategically ambiguous uh shape shifters. What I'm hoping to do now is show some empirical work that allows you to reflect on these constructs, shared decision-making, informed consent, and patient centered care. And understand my concerns about these words and constructs because they get thrown around constantly when we are talking about treatment decisions, patients rights, and how to care for a pluralistic population given a vast re array of therapeutic interventions. But first, I need to tell you what a strategically ambiguous shape shifter is. It's a term or a phrase that is used commonly, but so commonly and so broadly that it is variously conceptualized to the point where it has lost its meaning or it means so many things that the meaning is malleable. As such, it is used to say more about the user, typically the good intentions of the user, without referring to a clear or specific action. We throw these words around shared decision-making, patient- centered care, goals and values to signal that we are providing good care or that we care about something that is important to patients and families. Yet, they mean different things in different moments. And when pressed, we struggle to give a strong and consistent answer about what these constructs mean or more importantly how to establish them clinically. While all of these shifters might be key to providing highquality care and no doubt there are moments when they are done well, they have also mutated clinically and are used routinely in ways that are far a field from their original intent. And it is the widespread and ambiguous use of these constructs that thwart the vision and aspirations of clinical bioeththics. All right. Shifter number one, shared decision-m. I think most of us would um hold that JCATs is sort of the origin story of shared decision- making. This is the theoretical work. No single right decision exists. It's quite beautiful really. So how does this get operationalized? Concerns about paternalism, information asymmetry, and clinician bias have led to practice of shared decision-making as choice offering and information sharing under a guise of clinician neutrality. Often shared decision-m is operationalized as a decision aid showing pros and cons of each option. And remarkably, this is often implemented without a clinician. So we have this amazing theoretical work of JCATs generating something that we now call shared decision-making and it gets operationalized as presenting options and using decision aids to transfer information and gets actualized clinically as choice offering with neutrality by a clinician now who is somehow indifferent to the options and who in theory talks about the pros and cons of different treatments. Yet few clinical decision clinical decisions exist in clinical equipoise. When you look at our data, we find that surgeons who are reluctant to operate score much higher on objective measures of shared decision-making. These are the 45 surgeons in RP Corey study. You can see the group with the highest option scores got high scores when they were concerned that surgery was a bad idea. We see that when surgeons are hesitated to to operate, they feain neutrality as if they didn't have an opinion about whether surgery was a good idea. And then they push back with a profusion of risks, beating patients over the head with all of these risks when the patient appears to be choosing poorly. Here's another example from our data. This is a urologist talking to an 87 year old gentleman about whether he should have cystoscopy for his bladder cancer. and he says, "You know, we could do surgery. It's risky." But I've done this before in an 85year-old guy, but he was like climbing Mount Everest. So, somehow this 87year-old gentleman needs to think, well, can I climb Mount Everest? Is this a good idea for me to have this operation? Right? So, we offer choices and then we spend the next hour trying to talk patients out of them. I'm not that so sure that that's good for trust. And I think we use bioethicesists all the time. For a patient who is actively dying, we will offer them a choice of CPR and we will spend the next hour trying to talk them out of it. So here's where the empirical work might help us. We start with this great idea about shared decision-m. It gets operationalized as options and decision aids which then get translated clinically as choice offering with neutrality. We offer these non-choice choices. And then clinicians appear to withhold their opinion or their expertise as if their clinical experience was irrelevant or not valuable information for the patient and family. Shared decision-making is used in a way I might consider even nefarious now to suggest that the evidence is mixed or unclear when it's not. This is a problem and I think there are two problems here. First, shared decision-m is being operationalized as presenting options and transferring information. But second, shared decision-m is routinely routinized clinically as choice offering and feigning neutrality, pretending there is equipoise or excluding shared decision-m from moments where there's not equipoise, all while figning failing to contextualize a decision for the patient based on clinical norms. All right, shape shifter number two, informed consent. So, we'll give the theory to our friend/hero Justice Cordo. And again, while we might debate this, I'm going to invoke uh Bochamp and Childers for the opera operationalization here. And while other thing other people have done similar things in this space, I think we can all recognize these prescriptions as the critical elements of informed consent that the patient needs to understand the disease, the treatment, the risks, the benefits, and the alternatives. And I will hold that this operationalization of informed consent is the basis for our current patterns that we see in usual care. And it looks something like this. What exactly are leg ulcers? >> Well, quite simply, a leg ulcer is the consequence of tissue hypoxia following on eskeemia due to venus stasis evidenced by proximal varicosities and incompetent perforators or of course due to arterial insufficiency. There's full thickness epidermal loss, escar formation, in your case probably anorobic infection. You're going to need debridement, occlusive dressings, antibacterial and non-adhesive applications at least three times a week. nurse will organize it and I'll see you again in six weeks. Are there any questions? Nope. Are you sure? Yep. Fine. Then I'll see you in six weeks. Bye-bye. Byebye. So, um I will say that all of my data is not one big Monty Python skit. But it looks a lot like this. And when you look at the patterns of pre-operative communication, they're actually incredibly robust. We all do the same thing. We have this nice long conversation about the patient's disease. We show them CAT scans. We say this is you. This is you sliced like bread. How many people say bread? Many of my surgeons say bread. Some of them say ham. It just doesn't resonate with me. We say this is your liver. and this big white spot in your liver is a cancer and I'm going to take it out. This is your problem and this is the operation I have to fix it. It is a very technical conversation. It takes a lot of time and even if we go on to say it's too broken to fix. I'm not sure it's the right problem to fix or I can fix this but you will never be the same again. We always start the story with this is your problem and this is the operation I have to fix it. And sadly, this is what our data does look like. And I'm not expecting you to read this, but if you read it, you would realize it is the most beautiful description of how to do a Whipple operation. But here's the problem. It took me probably six or seven whipples to understand anything that was happening in that operation. So, it's not clear to me how a patient and family that is scared and sick in 20 minutes can figure out whether a Whipple is right for them by understanding this. It's as if a plumber has come to your house to fix your toilet. And they spend all this time talking about the flush valves and the gaskets and the magic of fluid mechanics that's happening in the back of your tank. And they have not once said to you, "How well is your toilet going to work? How long is it going to last? and what's it going to cost you? Cuz I don't think you need to know how your toilet works in order to figure out whether you want it fixed. And I definitely don't think you need to know how to do a Whipple operation to figure out whether you want one. Right? This is a problem. Our data also show that in more than 90% of the time, surgeons describe surgery as a way to fix the problem. And if we don't use the words fix it specifically, which we use a lot, we use words that sound just like fix it, like we're going to remove it, repair it, go around it, bypass it. If you haven't seen this video, I highly recommend that you Google orthopedics versus anesthesia. It's pretty hilarious cuz I have a fracture and I need to fix it. But here's this problem. We tell this overly complicated story about the patient's disease and treatment and then an overly simplified story that somehow surgery is going to fix this in fix this problem. I think surgeons are doing their best here to hue to the elements of informed consent, but I'm not sure it's helping patients and families because when we interview patients and families before and after surgery, they tell us they felt like they had no choice and they were completely blindsided by the experience of surgery. So, this is what our data looks like, right? The surgeons are doing their best to do informed consent. The way we operationalized it for them, but the way it plays out clinically does not support our patients and families to figure out whether it was right for them. I think that if we don't do this work, when we don't do the empirical work to see where things went wrong, I'm not actually criticizing how we evaluate this. What I'm criticizing is that if we operationalize this as understanding disease and treatment, it gets morphed clinically into something that doesn't work. And so, we need to understand these things in order to figure out how to do better. All right, this is probably where you're going to start throwing things at me. Shape shifter number three, patient- centered care. and this idea around goals and values, something we hear all the time. Yet, I suspect few of us could say precisely what this is. Also, I suspect many of us would agree with the notion that to provide patient centered care, we must first elicit patients goals and values and that this is how we might operationalize patient centered care. Honestly, I think this is really hard to do. I don't know if Lexi or Amber are here, but this is a gorgeous paper trying to explain how we might elicit patients go goals and values to articulate something about the patient that will then help us both decide what to do and confirm that it is consistent with their priorities and preferences. It is hard to do though I expect that there are some clinicians who truly do this very well. Here's how Arianne Labs has operationalized it. But there are real issues here. And I don't mean with Ariadne. I just mean with this idea of eliciting goals and values clinically. When we use the words goals of care, what we are really talking about is giving bad news. When we say we need to have a goals of care conversation, what we mean is we need to have a bad news conversation. I also think that outside of palative care, this notion of asking what are your goals is really hard to do. And I think for most clinicians, it's a non-starter. I also think it's really hard for patients and families to know how to respond to questions like what are your goals? I'm going to show another video which is humorous and I want to be clear that I am doing this with deep respect for our colleagues in palative care who I genuinely believe can do this well. But this video shows how hard it is to do and how this might fall short for the rest of us mere mortals. Please have a seat. Let's get you comfortable. Okay. How's that? Yeah, that feels nice. Would you like a chocolate chip cookie? Uh, sure. Now, have you thought about your goals of care? Well, I'm not sure. Wait, what? Uh, goals of career? Your career goals? I don't know what's going on right now. This is paliotative care rotation. This is a paliotative care rotation. >> I I just want to be very respectful of our colleagues in palative care. I think they do this well. I think the rest of us really struggle to do this and it's just so hard to implement clinically that I fear it gets implemented something like this. He likes to fish. He's not going to be able to fish anymore. So, we should palatively extate him. And sadly we have data to back that up. Another problem and as I have concerns that outside of some special circumstances these notions of goals and values are not operate the way to operationalized patient centered care. I worry that goals and values are not static or innate characteristics to be excavated clarified and then applied to subsequent choices or decisions. While this notion is appealing, goals are contextual. What we hope for today in the setting of good health will change dramatically tomorrow if we are seriously injured or diagnosed with a life-living illness. Goals are al often aspirational and vary in reach from likely to impossible. While most peop patients hold values that stem from life experiences, religious traditions, spirituality, or other moral connection, how they might value a specific health outcome depends on what that outcome is and their tolerance for the type of care required to achieve it. Moreover, I feel that fear that without a skilled clinician, goals elicitation can lead to a statement expressing preferences within a binary choice between life prolongation and quality of life when most patients want something in between. I believe we will not achieve the promise of supporting patient priorities unless we recognize and relinquish these ingrained notions and realize that invoking shape shifters says more about who we think we are than what we are doing or the work we are intending. We need to stop pretending that there aren't clinical norms that promote one treatment over another and that clinicians lack expertise or opinions that might be helpful in decision-making. We must stop describing surgery as a mechanism to fix something that is broken because this conceals information about the consequences of surgery and creates misunderstanding about the impact of surgery on the patient's life. And at least in surgery, we should flip the procedure for navigating goals and values by first describing a plausible treatment goal based on the patients problem and health state and then ask the patients whether and how much they value this goal. So how can we use empirical work to do better? By collecting data and reflecting on what went wrong. Did we operationalize this poorly? Did we operationalize it well, but it's just too hard for clinicians to do it and now it plays out clinically in unexpected ways? Or is it some combination of both those things? I think we can use data to try again to operationalize our conversations in a way that far better supports the interests of patients and families when we are making treatment decisions. So this is what we did. This is called better conversations. We used our data to understand the gaps where surgeons were falling short for their patients needs and develop a new strategy. Better conversations has five steps and I'll go through each of them u specifically. The first step is called show your cards. The second is to name the goal of surgery. The third step is to name all of the downsides of surgery, not just risks. Because really what we are trying to do here is to set patients and families up to deliberate about whether surgery is right for them. The surgeons are asked to define a plausible goal. They use their expertise to do that. But we are asking patients to tell us is this goal valuable to them? And if it is, is going through all of this tolerable? Is it is it tolerable enough to reach that goal? and then we can have an agreement and a plan on what to do next. All right, so how do we do these steps? Step one, show your cards. Now, those of you who say, "Well, we should elicit goals and values first." I get that you're starting to itch a lot here and it's very uncomfortable, but here's my thought about this. This is not a recommendation, right? This is a way to lay your cards on the table to contextualize the decision to say what is normally done in this setting because most patients when they arrive to some place where they have never been before will want to know what is usually done here. Right? So there are many places when we operate and that is what we usually do. Usually we do surgery for this or I think surgery can help you. We could start with that. Rather than telling people that surgery is a choice and then trying to talk them out of it, we might start that conversation by saying something like, "I am worried surgery is a bad idea." Or, "We don't usually do surgery for this." We're trying to normalize the decision and then look for outliers. It's not a recommendation. It's just a way to set the table. And finally, when there truly are two reasonable treat treatment options, you could start by saying something like, "I'm on the fence. There are two ways to do this, and we should talk about both of these ways to figure out what's right for you." Or you actually in the setting of clinical equipoise may have a preference for this patient, and you could say something like, "There are two ways to do this. I actually think A is better for you, but we should talk about both of these things because you actually may prefer B." I think it's critical that we show our cards and I think we already know that these normative positions exist. We did a large survey of surgeons from all different disciplines across the country and you can see there are a whole bunch of operations that we think you know this is what we usually do surgery for right when somebody's hypotensive and bleeding usually we do surgery for this. There are a lot of operations that we are concerned surgery is a bad idea. doing an open aneurysm repair on a 75-year-old with lifeliming coorbidities. And I think the example of mastctomy versus lumpctomy will ring true that to many here where we're on the fence. There are two ways to take care of breast cancer and we should talk about both of them. Here's some more data. I'll start by saying I will often start an operation and say to the medical student or resident, why are we doing this operation? And they will say something like the ABI is.3. And I'll say,"Well, why are we doing this operation?" And they'll say, "The patient has peripheral vascular disease. Why are we doing this operation? There is a blockage in the superficial femoral artery." And often I will need to ask that question five or six times before I get to to keep the patient from losing their leg to help the patient's pain go away. We make these implicit connections between the technical objective of surgery and what it might accomplish for patients. but we rarely express them explicitly. And if you look at our data, this bar graph shows that more than 50% of the time in our conversations, we do not mention the goal of surgery. And this is the challenge. Surgery can only do four things. It can help people live longer, feel better, prevent a disability, or make a diagnosis. That's it. Right? But more than 75% of the time, we don't mention those goals. I had this really beautiful 96-year-old who came to me with a 6-cm abdominal aortic aneurysm that was diagnosed on his preop CT scan for his taver. And the cardiologists were all up in my face. Oh, Gretchen, you better fix that right away. And I looked at this beautiful man and I said, you know, the only reason to treat your aneurysm is to help you live longer. And he looked at me, he said, well, I don't want that. Right? 25% of the time the surgeon will say that the reason to do this operation is to cure or control cancer. And I will admit that sounds awesome. But the problem with that is that if curing or controlling your cancer doesn't help you live longer or feel better or preserve some function, it doesn't matter. It just doesn't matter. So it's a little upsetting that we don't name these goals. many years ago and I think the other reason it's upsetting is it creates misunderstanding. Many years ago they did a beautiful study in the UK where they interviewed patients who were awaiting corateed endardctomy and they said to the patients before surgery what are the risks of this operation and very appropriately they said well I could have a stroke or a heart attack they even mentioned cranial nerve injury then they said what are the benefits and most of them remembered that corateed endardctomy was being done to help prevent a stroke and then they said things like the ringing in my ears will get better my shortness of breath will improve. My memory will get better. And for those of you who hate vascular surgery, it doesn't do those things. But you can imagine exactly where they went wrong, right? These patients were told they had a blockage in their corateed artery and surgery was going to fix the problem. And because they were not told precisely that the only reason to do surgery is to prevent a stroke, they started attaching their own goals to the um to the fix it to what the operation was going to do. I'll be honest with you, I give a lot of these talks and I've heard so many different stories from surgery about misunderstandings of what surgery was going to do. an elderly woman who had a niss and funfundation for her reflux thought it was going to pre cure her fecal incontinence. A thyroid nodule that this the patient thought was going to prevent their or was going to improve their parkinsonian tremor. My colleagues who do ingal hernia repair report often patients show up thinking that repairing their ingual hernia will improve their impetence. So step two, we need to name the goal of surgery and it needs to be in one of these four categories. And I think we can be more specific. When I talk to the vascular residents about doing a distal bypass, I'm like, what is the goal? And they're like, to prevent a disability. I'm like, yes, but we could be more specific here, right? And I also think it's important to um to shut down implausible goals, right? It is really important to say to patients, what are you hoping surgery would do for you? And if they say something that surgery cannot do that it is implausible, don't say, "Oh, it doesn't do that." But you could say something like, "I wish it would do that. It does this. What do you think of that?" All right. Step number three is called discuss all the downsides of surgery. And this is the idea that there are more risks. There are more downsides to surgery than just risks. Um, which we see in our data. Surgeons are actually really good at describing risk, bleeding, infection, stroke, heart attack, death. We do it all the time. But there's a lot more to go through surgery than just the risks. I will tell you that I did send a paper to Jamama surgery with the title, the bin of bad has three layers. It's a great pneummonic for remembering all the downsides of surgery, but you can't say in JAMAMA. I pulled all the literature about profanity and how important it was, but they still wouldn't let me do it. Um, but I actually think this is a really useful pneummonic. So, the first layer is this idea that like you have to go through surgery, right? And surgery hurts and even small operations take time and effort to recover from. I was talking to the vascular res residents about having an EVAR that's a stent in your aorta to fix an aneurysm with two tiny little incisions. I'm like, so what's it like to have an EVAR? They're like, "You come in, you have surgery, you go home the next day, and you're fine." I'm like, "Well, are you playing pickle ball the next day? You are not right." I asked a patient in clinic the other day, "What was it like to recover from his EVA?" He's like, "I slept for 16 hours a day for 10 days after my surgery." Right? Surgery hurts. Takes time and effort to recover. There's also a fair amount of followup. We forget this all the time. And patients who are unprepared don't tolerate this. Well, there are possible bad things that can happen. Again, we're good at bleeding, infection, stroke, heart attack, death. But there are other things, things we don't say because as surgeons, they don't occur to us as risks. We're not required by law to say them. But there are things that are important that would help our patients a lot to know in advance. The first is something I might describe as a bump in the road. I guarantee you if you go to the vascular service at the University of Wisconsin hospital right now, more than half of our patients are in urinary retention, right? It's really upsetting to need a catheter, but you could say that preop. Sometimes there are bumps in the road. People can't pee after surgery. It gets better, but people usually need a catheter and it's really frustrating. My husband, he's a transplant surgeon. He's sitting right here. He did a laparoscopic donor nephrectomy many a few years ago. And um the patient lived about three hours north of us in Wisconsin and she went home and she had shoulder pain after surgery. What happened? She went to the emergency room. What did they do? They got a CAT scan, of course. What did they find? Free air, transferred her all the way back to Madison, right? Shoulder pain after laparoscopic surgery is a very well-known bump in the road. Sometimes after surgery, people get pain in their shoulder. It usually gets better. So that's one of the things that we want to say about bad things can happen. Another thing is this idea of a major functional change. I think many patients would be very willing to trade off some major functional change in order to achieve the goal of surgery. For example, um about 20% of patients who have a cholectomy for cancer will have loose stools afterwards. Honestly, that seems like a really reasonable tradeoff for me. They won't be happy if they have loose stools afterwards for the rest of their life. But you imagine them stepping back and thinking, you know, this is kind of lousy, but it was absolutely worth the goal of living longer with surgery. And then the third layer is this idea that surgery can fall short. And if you look at our data, we never say this. Even when surgery goes well, we may not reach your goal. We do a Whipple operation. The patient recovers beautifully two months later and six months later, we get a cancer or get a CAT scan and the cancer is back. Right. We do an operation for back pain. The patient still has pain. On my service, it looks like a beautiful bypass. Completion angography is gorgeous. Three months later, the graft is down and we are having the same conversation about what to do with your foot. So, now that we've set the patient up to deliberate, we have told them a plaus using our expertise. We have told them a plausible goal. How much is it worth it to you? Does it bother you enough to want to go through this? I've told them I'm worried that the surgery is a bad idea. I'm worried we will fall short of their goal. Does my reasoning make sense to you? But this is what we want to do with patients and families. We want to deliberate about whether surgery is right for them because we're looking for outliers. Some people even though surgery is what we usually do, it's too much for them. And some people who for whom we think it's a bad idea because we are thinking that is very high likelihood that we will fall short of their goals, it's worth it to them. It's worth it to them to go through all of that to try to reach what is a very important goal for them. So this is my thought about this, right? We're trying to deliberate about the goals and downsides and we might call that shared decision-making, but I will just note that I have not used any of those words in this talk for the stuff that we're trying to do cuz they make me a little nervous. The last step is this idea of making a plan. And this is not like a logistical plan. This is a way to reflect back to the patient and say, "Here's what I heard. Every time you go out to dinner with your family, you have terrible pain after eating a large and heavy meal. So much so that you have stopped doing this thing that you enjoy so much. And going through a laparoscopic choleiccystectomy doesn't sound that bad for you. I think we should move forward with surgery. It's a way to reflect back that you think that their ideas about why to do surgery make sense. I just want to briefly talk a little bit more about this idea of I'm worried surgery is a bad idea. This does not mean I won't do the operation. It just means I need to tell you that I am concerned that there is a high chance of not reaching our goals or that your life will be so changed by surgery that you will feel very frustrated that you went through it. And I think the challenge that I had said before is that when we are worried surgery is a bad idea, right now what we do is we offer choices and then we pound people over the head with this. It's so risky. You could die. You could be paralyzed. You could lose your kidneys. I don't actually think that's a particularly effective way to talk to patients and families because they'll say something like, "There's always a risk. There's a risk to everything. There's a risk to driving a car. I'm willing to take the risk because this is what I want to do and you told me you would fix the problem. All right. So, this is my dream. Better conversations. What does it do? Um, my surgeons who use this routinely say, and I use it exclusively, say that it really helps them feel that when they've made a decision about surgery, it is absolutely the right thing to do for this patient. patients are far better prepared. So when the inevitable unwanted event occurs after surgery, it is actually much easier to work with them. Um I had a patient who said, "You told me something like this would happen." I'm like, "I definitely did not tell you were going to get a large scrotal hematoma after your iliac stance." But because we had deliberated, he felt that we had had a conversation about what it was like to have the surgery and recover from it. And then last thing, it actually really saves surgeons time. And I I don't know how you all feel about that, but I'll be honest with you, it is very hard to change practice and ask people to do more. Clinicians are working really, really hard right now. And just work harder is not an answer. I really think we need to be more efficient in what we're doing. And you will notice none of those five steps is showing a CAT scan, drawing diagrams about the procedure. were trying to teach the patient about their disease and the treatment. So, what am I going to do next? Um, well, here's the underpants story. Um, I don't know, honestly. Um, there's this really wonderful South Park episode many years ago where the kids thought that they could make a lot of money by stealing underpants and they didn't know how to do it. And so, ultimately what they ended up doing is just stealing the underpants. And I think sometimes when you don't know how to get from A to C, the right thing to do is just to do A and figure out what might come next. And I'll be honest with you, like I love being a researcher. I love doing observational research. I love the creative space of trying to think about how to do better. Um I don't really like implementation or education for that matter. I know I'm like just getting down under the thinking here, but I actually worry that without really thinking about things like education and implementation, we actually can't change anything. And this is another space where bioeththics needs to do some work. And I love the presentation before this because it was really talking about education and how important that is. So one of the things we've done is develop the fundamentals of communication in surgery. It's uh two hours for each year of uh surgical training and it does three core skills. Attending to emotion, better conversations and scenario planning to uh deliver prognostic information using the best case and worst case format. So this is one way to change practice. I will tell you that residents are very easy to change. Attending surgeons are not. Um so how can we change attending surgeons? Um, I have found that really, um, what they need is, um, practice with feedback. And what we've done is audio record conversations and then send them an email. Here's what you've done well. Next time, try this. It takes about 10 rounds of feedback in order to get them up to speed. And some of them, they're just never going to get there. Either they're not motivated, they don't see it, it's just too hard for them. But I think the only way to get this done is to slip into practice and make it easy for them. and then just give them little nuggets of feedback. Um, fortunately, there are some actually really nice quality initiatives that might go along with this. And all of us, like I think actually requiring people to document things, I freaking hate it, right? Like I just can't stand my in basket telling me I haven't done the right thing. And yet those things actually do change practice. So that's another way to think about it. What if we documented the goal of surgery and you had to document the goal of surgery when you booked the case? We could change it that way, too. At the end of the day, I'm more fond of carrots than sticks. And I actually don't think we're going to change clinical practice unless it makes the world better for surgeons. And to be honest, my surgeons who do it and get it well, they tell me they'll never go back. That this changed their life, this changed their practice, and it really works for them. So, I have a few minutes left, and I want to say some quick thank yous. Um, so this is the other great thing I got out of the lab which was a really great husband. Um, he has a new book out uh this week. Um, it's uh it's about xenotransplantation and it's incredible. While many people talk about the courage to fail, Josh talks about how innovators in xenotransplantation have the courage to succeed and I find that completely inspiring. It makes me think a lot about my dreams and the need to hold on tight and all the things we might accomplish if we were not afraid. And finally to my parents Sharon and Bill Schwarzy who are sitting here in the front row. Um they led me to believe that I could be anything that I wanted to be. And as someone who grew up in the 80s and who has wanted to be a surgeon since I was very young, they never once hinted or suggested that surgery was not something that women should do. I know that doesn't seem like a big deal now given how many women there are in surgery, but it was a big deal then. So, thank you. I am so grateful to the MLAN Center, not just for the prize, but for putting me in the place to do things that would be worthy of such a prize. Thank you. Apparently, I could take some questions. Just don't throw anything at me. Well, I think you have to turn it on. >> No. >> Okay, that seemed better. Um, fantastic lecture. So honored you're here uh to give to accept the prize this year. Uh my question is about the idea of doctor as teacher which it seems like your framework doesn't have an explicit step of explaining to the patient what's going wrong with their toilet like why it got clogged in the first place. It sort of jumps jumps ahead. Do you think that that information teaching the patient about their own body and what's happening to them is not ethically relevant or should it occur in a different space in the surgeon's office or does it happen as part of your conversation approach? Yeah. So, this is a conversation about what to do and there may be other types of conversations we need to have. But I also have some real concerns about how we think about health literacy that somehow we have to bring them up to our level instead of translating for them what we know and about how health care can accomplish goals that are important for them. So, you know, I don't really want to know how my refrigerator works. I just want it to work. And so while I think it's important to think through the kinds of things we might want to talk to a patient for with something like diabetes for example, I worry that if we don't start that conversation with the reason to take insulin is to help you keep your eyesight, not lose your kidneys, keep you from having an amputation. Let me tell you what it's like to take insulin. Right? I think the problem is like we have gotten so focused on this idea of um you know reducing these asymmetries of information that we tend to information dump and forget how to translate what patients need for them. So, I think your question is an awesome one and it probably needs some more, you know, sort of more intellectual work, but I think we could do better and thinking through like what do they need to know in order to be healthier and what are these things that I'm trying to tell them because they're curious or I like to show them what I know or all of these other things, right? So, it's a really awesome question that I probably need to think more about. Thank you, Josh. Josh and I went to med school together. >> [laughter] >> Gretchen, thank you. I'm Josh Hower. I'm a p of care physician at Northwestern in the VA. And um yeah, my main claim to fame is I was a classmate of Gretchen's and she was the star of our secondyear show. I was a supporting member of the cast. >> Yes. >> Um and Gretchen, you said that uh you don't like education, but boy are you a great educator, so thank you for that. Um my question is one about anti-eliberation and you know I'm on I'm on rounds last weekend at Northwestern Memorial Hospital. I'm a pal of care physician [snorts] and by the way I I hope to be a counterargument to your compliments of pal of care physicians. Um I see a patient for first time I'm on on the weekend and I do what the pal of care doctor does which is ask questions and explore and I hope I do that in a kind and a compassionate and a meaningful way. And within 40 seconds, this patient's husband says,"I don't want any questions. I want you to tell me what to do now." I'm not a surgeon, so I have a hard time with that. Right? And I I say that jokingly, but I think it it's a real challenge, and I I was sort of taken aback by that and and I think we got back on our feet after that. But in a world that you're sketching out that I'm I'm part of that really prizes deliberation and reflection and all that stuff and I'll continue to apprise those things. What happens when we bump up against Well, you talk about surgeons that might object to that, but what about patients and families that object to that? >> Yeah. So, I mean, you and I can talk offline about this a little bit, Josh, but I think you fell into the cognitive trap there. So, this is the thing. Um when we um taught surgeons to do best case worst case initially they'd get right up to the end of it and they'd be like okay great make a recommendation and the surgeon would look at us and they'd say no my job is to offer choices and their job is to choose and I worry that you are correct that this is actually abandoning patients and we even have surgeons saying something like you know the patient will say what would you do if this was your dad and the surgeons would say I don't know he's not my dad right and so I do think there is this tension ion where one thing you could consider saying and you know I'm probably not as good at this as you are but something like I would love to make a recommendation but I need to understand more about you in order to do that. What would you think about being in the ICU for 3 weeks? What would you think about going through all of this only for us to have your cut to cut your foot off six months from now? Right? I think it's really this space of like I need to understand what your impression of how you would tolerate the treatment, what you think about the health state at the end and how much you're willing to go through when the chance of achieving that health state might be low. And I think there are ways to ask those questions that don't require the patient to choose, but allows us as clinicians to understand more about what is okay and not okay for them. And then to say, "Here's what I think we should do. Given what you told me, what you said about being in the ICU, maybe we should go a different way." >> Thank you. >> Um, amazing talk. And again, I know you said you're not really into education, but I'm wondering if there's any of this um particularly with the work you've done on the training of residents in communication styles that would be potentially transferable to other parasurgical specialties like OBGYn. >> Well, I would never put OBGYn in parasurgical. I would say that is surgical. >> Yes. But but but is there any interest or any of this that you think that could be utilized in in our field as well? Yeah. Yes. 100%. So, we actually have a lovely um group of OBG uh OB uh gyn oncologists who are trying to take the cases that we have in FCS and make them gynon oncology. I actually think that if you hold on to the core skills, it's actually pretty easy to translate into um any other surgical space. Um I am going to stick to my surgery lane and be like this is for surgeons. But if you are not a surgeon and want to sort of consider how we might adapt this for non-surggeon clinicians, I think that that's something that could be done as well. Thanks for the question and your talk was awesome. >> Thank you so much, Gretchen. >> Um, so we've actually um started to assign the uh uh innovations in surgical communication series for our medicals. >> Oh, cool. >> Um, and >> thanks. It's wonderfully received. Um, but one of the interesting things is that in the first show your cards, we always get the question, um, this seems real, this seems to make sense, but isn't this paternalistic? And I think one of the things I was really struck by in the diagram of theorize, operationalize, evaluate is that the evaluate always led us back to the question of operationalization. And I'm wondering when we see breakdowns in the evaluation stage, how do we think about when we should revisit operationalization versus revisiting the theory? >> Yeah, that is such a brilliant question and uh I mean I'm kind of blown away that you just said that. Um so I thought about including that part in my talk that maybe the theory is wrong. Um and I think that that's also work that can be done and I think there are different types of um methods and schools of thought like I think linguistic anthropology might consider you know some sort of you know the words that we use aren't making the theory work so maybe the theory is wrong right like that because it doesn't get effectuated well it actually points back at the theory so the theory is wrong and I just want to call out that you know sort of using these words like paternalism well that's a strategically ambiguous shape shifter But it goes in the reverse, right? It says you're bad. Yeah, great question. Awesome. Hi. >> Hi. Thank you so much for this wonderful talk. I'm thinking about my own experience as an emergency medicine physician and I want to ask you whether this works in those scenarios where there's you know heroic procedures are the only the only thing to do and I ain't going to offer that these sorts of kind of conversations we have in those acute illnesses um or those traumatic events where we can't force a do anything. and sometimes they don't offer anything yet the patient's left with well this is my shot or this is my chance. So how would we amend these rubrics towards that end? >> It's such a good question. So I actually think that for many of us surgeons of of us as surgeons there is a line in the sand and after that line I am not operating on that patient under any circumstances. If I get called from Beaver Dam with a 90year-old who's got who's hypotension with a rep ruptured aneurys and they're like we're loading the helicopter now. don't send them. I can't change that outcome. The goal of this operation is to help this patient live longer and that is not plausible. So if the goal is completely implausible, I think it is reasonable to draw that line. But I actually think there are not that many cases like that. And we could start with the 89year-old guy who I saw two months ago with a pretty nasty aneurysm and start by saying, "I'm worried surgery is a bad idea." The reason we do this operation is to help you live longer and I worry surgery won't do that. Let me tell you what it would be like to go through surgery. And honestly, once we went through all of that, he's like, I'm not doing that surgery. Right? And so I think that there's a difference between drawing that line and saying I'm not going to do this because the goal is implausible and saying I'm worried this is a bad idea but it's still plausible even though the chance of falling short is incredibly high and then trying to figure out which patient is willing to take on that you know that really tough um intervention knowing that reaching their goals is very low. >> An awesome question. Oh hi Andrew. Andrew was my medical student, the first ever to work in my lab in Wisconsin. >> Part of the reason I'm here today. Uh my question is actually centered on uh populations where this might be more difficult, specifically those who do not speak English as a first language. >> And so um where I practice in Minnesota, about 30% of my patients are non-English-speaking, specifically Somali. Um how have you seen this work in non-English-speaking patients? >> Yeah, it's such a good question. So, our um patient and family advisory council has um several people on it who actually work as medical interpreters. We have a mung interpreter, a Spanish interpreter um and uh and they love better conversations. And you know what they say is the most helpful is that now the patient doesn't have to guess what the doctor is thinking because as an interpreter what happens is the clinician comes in they say all this stuff the clinician leaves and the patient looks at the interpreter and says what should I do right it just we we're not transparent about our thoughts and we leave people hanging and so I think you know I mean it's a small group of people responding that way, but it's just, you know, laying these cards out and being transparent and then walking through it in a way that most people can understand, I find really helpful when there's language discordance. Thanks for the question. All right, I know you're all hungry, so I'm super happy to chat around lunch, but thank you. Thank you so so much for this.