 Our next speaker will be Dr. Gretchen Schwarzie, an associate professor in the division of vascular surgery at the University of Wisconsin in Madison. Gretchen attended Harvard Medical School, followed by residency at the Mass General, and a fellowship in vascular surgery here at the University of Chicago. She then completed the McLean Ethics Fellowship in 2003, 2004. Like far, Gretchen was also a Greenwall Faculty Scholar from 2008 to 2011. At Madison, Gretchen is on the ethics committee and the ethics committee of the American College of Surgeons and has published widely on surgical communication and decision making, informed consent, and end of life care. Today, Dr. Schwarzie will give a talk entitled Beyond Informed Consent, Harnessing Opportunities to Improve Preoperative Decision Making. Please join me in giving a warm welcome to Gretchen. Since we're conveniently behind. Thank you very much. It's just a delight to be here. I'm going to start by showing you some empirical data. It's primarily observational, which is a little different for me, because usually I come and talk about some interventional studies that I've been doing. Einstein said that if he had an hour to save the world, he'd spend the first 55 minutes trying to figure out what was wrong with it and the last five minutes trying to figure out what to do. And so I want to show some observational data initially so that we can then think about how to target some interventional strategies to change the problems that we see in real time. So as many of you know, I was interested in this thing called surgical buy-in. And as part of my studies of surgical buy-in, I went on to audio record surgeons and patients talking about major high-risk operations, valve replacement, neurosurgery, cancer surgeries, big vascular repairs. And my former chair of surgery, Bing Ricker, said, you know, the acute abdomen is like Christmas morning. You never know what you're going to do when you open it up. And that, I have to say, is the same about qualitative data. So I went after these conversations to try and figure out if surgeons were having this buy-in conversation. And I did learn something about that. But the things I found in addition to that are actually far more exciting. So I'm going to try to explain those things to you right now. So as we were listening to these conversations, we noticed that surgeons used words like fix it. And they said these words over and over and over again. And we noticed that the pattern of preoperative decision making was actually incredibly robust. It looks much like this diagram here, that the surgeon started first with an explanatory phase. This is your problem. And this is the operation I have to fix it. Now you might imagine, since all of us are pretty well-versed in the tenets of informed consent, that this is the surgeons trying to do their best to solve that first tenant. Patients need to understand their disease and the proposed treatment to take care of their disease. So this is what that first explanatory phase looks like. The surgeon says, you know, your artery should look nice and smooth, but see here, it's bumpy. It's rough. Your ventricle, it's pumping the chamber in your heart and it's failing. Or your valve, it's actually both leaky and tight right now. So they used a lot of language around how people were broken. And then they went on to propose a treatment to fix it, meaning that your valve is getting smaller. So I can take it out or put another valve in. We're going to have to remove this part of your heart that's not working or build a bridge around the obstruction or just create a tube out of your stomach to take your esophagus out and then replace it. And this fix it language, I worry, sets patients up to attribute their own possibilities of what surgery might do for them. Because first, the surgeon talks about your problem and this opportunity to fix it. Joanne Lynn noticed this a long time ago and had a brilliant paper about mental models for decision making. And she was quite concerned that our notions of health and health care follow this mental model, where health is being normal. And then when you're ill, that's something that is broken. And the goal of health care is to fix it. And while she says that works perfectly well for strep throat or appendicitis, it doesn't work well for most of our patients, particularly our patients with chronic illness. We too worry about this when we think about how surgeons talk to their patients. Now you might say, well, gee Gretchen, this is just 50 conversations between surgeons and their patients. And I understand that this isn't the kind of data we're used to looking for with large data sets that are generalizable. But in qualitative data, what you're looking for is something called resonance or transference. And I have to say, I think that this mental model for decision making is very robust and very ingrained in our culture. For those of you who haven't seen this YouTube video, this YouTube video, if you Google orthopedics versus anesthesia will come right up. It's got over a million views. What you see here are two little bears and the bear and the blue stripes, up and down stripes is an orthopedic surgeon and the bear and the red stripey thing is an anesthesiologist. And the orthopedic surgeon says to the anesthesiologist, I have a fracture. I need to fix it. And the anesthesiologist says, where is the fracture? And the orthopedic surgeon says, it's in the emergency room. And it takes them quite some time to find out the fracture is in a 98-year-old woman who, oh, conveniently, has something that orthopedic surgeon has never seen before. A systole. So I think this notion of this fix-it model is very pervasive and it really challenges patients when they go to try and make a decision about surgery because surgery is presented as a way to fix their problem. I have to say, in these high-stakes decisions, our surgeons actually back off from the fix-it model pretty quickly in what we see as this deliberative phase, where they're really trying to debate in front of the patient whether surgery is valuable to the patient or not. And I think that this is sort of where informed consent probably has done a good job, but maybe a little too late. Maybe it's a little too late to come and deliberate about whether surgery is valuable once you've already told the patient that the patient has a problem and you have an operation to fix it. But let me show you how the surgeons attempt to do this. So first they say, well, maybe your problem cannot or should not be fixed. Perhaps it's too broken to fix. Your valve has been such a problem for so long that even if I fix your valve, your heart's not gonna be any good. Or maybe it's not broken enough to fix. Sure, I can see this abnormality on imaging or in other places, but that doesn't necessarily mean that this is the right time to do it. Or clearly there's a problem that we can see here, but I'm not actually sure that this is the problem that is giving you the symptoms you've come in to see me for. In addition, surgeons go to great lengths to talk about complications. And they say, sure, I can do this, but you may never be the same even after I do it. There's some terrible complications that should occur. And even though I can fix this problem, the outcomes of surgery are variable. Not everybody feels better after surgery. Not everybody lives longer after surgery. And finally, even though you may have the best outcome possible, that's never like you were before because honestly your stomach is actually not that great a replacement for your esophagus. So what are the patients thinking in all this? What do they do? So this is one of our neurosurgeons and I would say he's just fantastic, right? He's going through all of these risks that we're supposed to disclose as surgeons. You could have a stroke or damage to your visions. And very appropriately he says, what questions do you have for me? And the patient says, well, I wanna know if I can wash my hair. And the doctor very appropriately responds to that. And then the family breaks up questions about stitches or staples, asking logistic and technical concerns. When really this was a moment to have a conversation about whether surgery was valuable for the patient. And I worried that this pattern of decision making that we set up really sets patients up for failure about really understanding what they're getting into. The second part of our qualitative study is we did another 50 conversations but then interviewed patients before and after surgery. And we found that there were some real gaps. Patients misunderstood what was happening and had some major questions that were not answered because sort of they didn't know what questions to ask. So this is what patients said to us. They felt that surgery had to be done. There were no other options. They didn't have a chance to decide. They saw the test and the heart surgeon said, well it should be done. There really weren't any other options. Which if we know about informed consent there are options, right? There's always an alternative not to do it. Patients were really surprised that recovery was so arduous. They said the surgeon told me there could be complications but I didn't know it would be like this. And finally there was very little conversation about advanced care planning. What would we do if things went wrong? You can see this one wife we interviewed after her husband died from her surgery. There was no pre-operative to conversation about limitations of life supporting treatments post-operatively. So we took all this data to a group of stakeholders and started to ask them how could we change this? What kinds of questions would be more important and how could we change this conversation in a way that patients would make better decisions and feel more informed? And they brought up three things that were lacking. Three things that when patients ask questions about washing their hair and if you're gonna wave stitches or staples they don't get to the answer that they really need to think about. They don't understand the implications of surgery. They said we really need to talk about choices. We really need to talk about expectations and finally complications. What happens when things go wrong? How are we gonna manage this? So this is my observational data from patients from stakeholders and from actual surgical conversations. And now I wanna talk for just a few minutes about interventional strategies that might change the way we talk about surgery. So the first idea is this idea about changing the frame. If every time I go into the room I say, you know, you have a blockage in your leg and I can do a bypass to fix that it's gonna be really hard to have a conversation about whether we should have a bypass. And a better strategy might be to show up and say, you know, it's really bad news to have a blockage in your leg. I'm worried that you could lose your foot, but let me tell you today we have a choice to make and the choice is about whether we should do surgery or not and this is what we might expect. I also really love Joanne Lynn's solution to this problem. She says rather than talking about the problem and how to fix it and focusing on each individual problem and not the whole of the individual she says we should tell stories like books off the shelf. If we're gonna talk to patients about treatments we propose, we need to tell the story that goes with that treatment. I love that idea. I think this best case worst case intervention that my lab has been doing really tries to model that. Another issue is this idea about listening preferences. I think when we ask patients what questions do you have for me that's done in an honest way we've been taught to do that and we've also been taught to sort of ask them to choose after we disclose risk but I actually think it's far more important for us to find out what patients are hoping for and what things are too traumatic for them. What treatments are too burdensome or would make them unwilling to pursue surgery. So questions from the surgeon about what are you hoping for or what might you fear could change that conversation as well. Finally, I love the idea of intervening on patients. I've spent a lot of time doing physician mediated interventions and they're really, really hard but it's actually really a lot more straightforward to work with patients to help them achieve the care that they want and so patient mediated interventions where you intervene on patients before they come to the surgeon and prepare them for decision making might be a far better strategy and a far more easy thing to accomplish. One thing to do is something called a question prompt list where you feed questions that my stakeholders identified. Will surgery help me live longer? Will surgery help me feel better? These are the kinds of questions patients could ask that would allow them to inform their decision making. I think decision aids actually go a long way to prepare patients for a good conversation with their physician and finally actual patient navigators could be really helpful. So we are actually testing something called a question prompt list in my lab right now. This is a study funded by PCORI. It's really silly. I can't believe the government gave me $2.5 million to test a paper brochure but indeed we've now enrolled 310 patients in this multi-site randomized clinical trial where patients are sent a brochure before seeing a surgeon who performs high risk procedures. And this allows patients to ask the questions they might need to ask to understand whether surgery is right for them. So hopefully I've done a little bit to get us back on time and I'd be very happy to answer questions. Thank you very much. And the question makers want to keep us on schedule too. Gretchen? Gretchen, you're going to like totally delay us. No, I don't want to. Marshall, Shen, University of Chicago. Wonderful presentation. You referred to Joanne Lynn. So let me think like a lot of things you mentioned are have parallels to life. Culture of surgery perhaps may be even hard to change. As hard as it is to change the culture regarding end of life care in some ways it seems to be such a unfortunate sort of dichotomization between I think what you describe as state-of-the-art principles and then the stereotype of how surgeons are trained. So I'm wondering as you think about that broader context of your surgical world then how do you start proceeding ahead? So you mentioned like these patient oriented interventions for example, but this one that's broader culture of how surgeons are trained. So unless that's addressed also I wonder how far it can go. So what are your thoughts about moving ahead? Yeah, I mean so I love the surgeon mediated interventions because then you're not putting such burden on the patients to change things. There is no doubt they are harder. I have to tell you I've been running around the country like sort of bashing informed consent and how bad it is for decision making. And I want to sort of step back from that and say at least it does something. And the fact that surgeons already have this idea that every time I walk into a room I need to have a conversation that includes some of these elements if not all of them is actually a great starting point. For example, for the last year I've been working with nephrologists who are lovely and their patients adore them but they don't actually see dialysis as a decision point nor do they use informed consent. And so trying to intervene on that conversation and insert shared decision making there is really, really hard because they don't have a platform for which to do it. So my surgeon mediated intervention which is called best case, worst case. Like the surgeons like they picked it up like this and they love it. And that enthusiasm is a bit of a blessing in a curse because they think they do it awesome and they don't. But at least they're excited about it. Whereas the nephrologists are like why would we have this conversation? Like that doesn't make sense to me. Which is not nephrologist bashing it's just to suggest that informed consent does something which it inserts this hard stop on the conversation and then allows you to build from something that was inserted a long time ago. And I think in settings where that hard stop doesn't exist already, the barriers to intervention are actually quite a bit higher. Yeah. Thank you.