 So, that's a very nice segue to our next speaker who is Dr. Gretchen Schwarze. Gretchen is an associate professor in the division of vascular surgery at the University of Wisconsin. Gretchen received her medical degree from Harvard Medical School, a master's degree in public policy from John's John F. Kennedy School of Government. Her residency was at Mass General Hospital in surgery, fellowship training in vascular surgery here at the University of Chicago, where she also completed an ethics fellowship at the McLean Center. Gretchen's research interests are in the doctor-patient decision-making for high-risk operations, end-of-life care for surgical patients. She is an alumna of the Greenwall Faculty Scholars Program. She currently holds a K-12 award via University of Wisconsin CTSA, as well as an R03 award from American Geriatric Society and the Society of Vascular Surgery, and so many, many things. Gretchen is a good friend and also a member of the Ethics Committee of the American College of Surgeons. Thank you. So, I'm going to tell you a story of a patient who came to our hospital recently. She was frail and otherwise quite really just sort of making it at home. She was in her late 70s. She had really bad obstructive pulmonary disease and her kidney function was failing as well. Given that she had wonderful family support, she was able to live at home, but she got a lounge with a walker. And unfortunately, she came to our hospital with a tender thoracoabdominal aneurysm. And this was a very threatening situation for her. And she had a long conversation with one of my partners about whether she should have surgery for this aneurysm, which could potentially kill her. And he spent quite a bit of time with her, very appropriately going through the risks of surgery, telling her that she had a 50% chance of dying from surgery, that she had a 60% chance of being on a ventilator long term, and an 80% chance of having kidney failure complete and permanent kidney failure after surgery. He also very appropriately offered a non-operative choice, expressing the possibility for palliative care instead of surgery. And she and her family thought long and hard about it, and they said, yeah, I think I'd like to go forward with surgery. So very soon after that, she went to the operating room. And my partner spent a long time in the operating room working on her. It was a very difficult operation. In about eight hours, they used many, many units of blood. But afterwards, they got her to the ICU. And she was what most people after this big operation look like in the ICU. She's intubated. She was on a lot of fluids. But she wasn't requiring blood products. She seemed to still be making urine. And the vascular surgeons came by and they said, well, this is as good as it gets here. They were happy. This was the best thing that could happen after surgery. A few hours later, her family came in to see her in the ICU and they took one look at her with her puffy, puffy face and the breathing tube in place and machines and wires and things going all over the place. And said, no, she would not have wanted this. And they turned around and they asked my partner to remove all life-supporting treatments. And so if I had to describe what happened to this patient, I would describe this as unwanted care. And there's more and more information about unwanted treatment in the medical literature but also in the lay press. And what these papers all have in common, besides pretty crappy titles, are very compelling stories about people who received unrunned care at the end of life. And so if I had to contextualize why we have this problem, I would say the problem is informed consent. And you can imagine what this patient did when she was thinking about surgery. If I have a 50% chance of death from surgery, well then I have a 50% chance of living. If I have a 60% chance of pulmonary failure, well then I have a 40% chance of not having pulmonary failure. And if I have an 80% chance of renal failure, well then I have a 20% chance of not having kidney failure. And so you can imagine she went down the list, 50, 40, 20. I have a 20% chance of being exactly like I am before surgery, afterwards, when that was never in the cards. And so my concern is that we're using this very clunky mechanism to make decisions with patients that hasn't changed in many, many years. And I think the problem is that we're very interested in innovating technology and everybody's getting their own thing, Chaney gets his VAD. And I'll be honest with you, a few days ago I did a ruptured AAA, or ruptured aneurysm, through two incisions this big, 26-year-old guy who walked out of the hospital two days later. I mean it just blows my mind that technology has changed that much as I've been attending surgeon. And yet the thing that we don't seem to be willing to innovate, or we haven't invested much time or effort in innovating, is communication. And as such, we're stuck with this very clunky process of informed consent and we get the decisions like the one I gave, the example I gave. So our group has worked hard to try to innovate this process, and this is our innovation. It's called Best Case, Worst Case. It is a graphic aid and a way of talking to patients. So what the surgeon does is takes a simple piece of paper and draws out these stars and boxes. And as you can see, there's clear presentation of an obvious choice. For our patient that I just described, the choice is between surgery and supportive care. The other thing that's described on the paper is uncertainty, meaning that there is a best case scenario what would happen if everything went well as well as a worst case scenario, suggesting that there's bookends to what is possible. In addition to that, the surgeon is asked to use narrative to tell a story about what it might look like when you have surgery, in order to describe to patients in a way that they can understand the tangible outcomes and relate that to their lives and so they could have a conversation subsequently about whether that was important for them or not. And finally, the graphic aid uses some probability by saying there is the most likely outcome. And so if I were to use our intervention to talk to this patient about surgery, what I would say is we can do surgery. Let me tell you what the best case scenario is. In the best case scenario, I would take you to the operating room and we would be there for about 8 or 10 hours. It would be long operation and then afterwards I think you would be in the hospital for a couple of days of care unit, probably for 3 or 4 or 5 days with a breathing tube. If everything went well and you didn't have a complication and we got through it, then you'd probably be in the hospital for another 10 days or so maybe a little bit longer trying to sort of work through what it was to go through surgery. Then after that, given what I know about you, given that I know that you were just and if we're lucky, in the best case scenario, we can get you to a nursing home after surgery. But given that you were just barely making it at home with all of these medical problems, I don't see you getting back home again. And that's the best case scenario. That's the story. And then we would go on and talk about the worst case scenario and I have to tell you, I think people sort of think the worst case scenario is that you die but you die in the operating room which for many old people does not sound that bad. You go to sleep and you never wake up. It's peaceful. You don't have to make any decisions. But unfortunately in this day and age nobody dies in the operating room anymore. People die after surgery after lingering in the ICU for about three or four weeks of multiple complications. So that's the story about death after surgery that needs to be told. But by using narrative, we can explain to people what the possibilities are and then say in the most likely scenario this is how I see it. And the same can be done for the alternative and it doesn't have to be palliative care but certainly for this patient it would have been palliative care. I think the thing that I really like about this is it interprets the information that we are already giving to patients. Sharon Kaufman is a brilliant anthropologist at San Francisco and she says patients don't need more information. They just need more interpretation of the information we give them. So this is how we see it fitting into the decision making conversation. We don't see it certainly as replacing informed consent. It's a legal requirement and certainly risk disclosure is important but we're not using informed consent to make a decision anymore. And the idea is that the best case worst case tool can be used to demonstrate that there are options and also show what the choices are about. What does that mean for the patient? The way it works really nicely is that patients can start to visualize outcomes for which they must prepare and then in turn talk to the physician about how they feel about those outcomes so that the physician can ultimately recommend a treatment that's in line with their preferences and goals. So we started first by doing some focus groups with seniors and with surgeons. This is my colleague Toby Campbell who's posing as a surgeon here. He's a palliative care doctor and my neighbor is the patient. And we went out into several different senior centers in Wisconsin to get their feedback about our intervention. And the seniors liked the intervention. They gave us some nice suggestions about how to improve the graphic aid which you've seen in the final version up there. But they liked that many different people with different values and goals could use the tool and it seemed very neutral that it could apply to many different people. They also liked that it showed what was possible and what wasn't possible and many times people would attribute different outcomes to surgery that they hadn't mentioned or that just sort of assumed things would be a certain way after surgery and this put bookends on that and that was important to the surgeons. So moving from there we thought we might test our intervention and our hypothesis was that if we taught surgeons to use the best case, worst case tool we would improve their ability to engage older patients in decisions about surgical treatment and preferences and values. And we did a very simple pre-post pilot study. We've completed all of our enrollment and enrolled 10 patients in our control arm and 20 patients in our intervention arm and right in the middle we spent quite a bit of time teaching surgeons to use the tool. To be honest it's actually much harder to use than it looks. It seems very straightforward but teaching surgeons who are very used to quoting lists of risks to talk in narrative about outcomes was a real challenge. So the good news. The good news is that surgeons can do it and they actually do it fairly well some are better than others obviously and I think that what it does is it takes everybody sort of baseline communication skills and lifts them up a bit. The other good news about the surgeons is that they actually seem to like it. We used a survey called the Practitioner Opinion Survey and it's very, very highly rated by surgeons and even after our study is over 75% of surgeons say that they're still using it. And this is just an example of a tool that was used with one of our patients. He was very elderly gentlemen my colleague wrote out the best case worst case intervention of amputation versus home hospice for very severe four foot sepsis and you can see he wrote down really important information that you might want as a patient or a family member to make decisions about this so the value of the amputation was that he would be alive but overall his prognosis was poor and that if he was really lucky in the best case scenario he would live another year at a nursing home. He was quite clear that there is a potential for death even if the patient had amputation and also on the best case side at home hospice it was very clear that death would come sooner. So this is a huge change in the way my colleague talks to patients we're quite conscientious of this change. The second good thing is that patients really like it and part of our study was to go to their house about 30 days after the treatment was decided upon and talk to them about the best case worst case tool or talk to them just about their decision and literally the patients or their family member would just find a drawer and pull the piece of paper the graphic aid out of the drawer and say you know this was really helpful not even with prompting because of course we didn't tell them what the study was about and one of the other things that the patients like not just about having it was that they could share it with other people they could share it with their family members after the surgeon had left that it had things written down so they didn't forget but they could also get other physicians or other care providers to help them interpret what was on the paper as well so that's great so here's the problems so the first is that surgeons are busy people which I don't think I need to tell anybody that they're probably less busy than they think they are but certainly they're very very busy and while we got 25 surgeons to show up to our training sessions that were scheduled one-on-one at their convenience in our sim center totally around their schedule about 25% of them missed their original appointment and not only did they miss their original appointment they missed about 2 or 3 appointments after that and so it's a lot of resources another issue is that it's very sad but there are many older patients who are in the hospital who are critically ill and very sick and they're there without family members and patients who are really making it and are cognitively okay at home it takes about 5 seconds of diverticulitis or sepsis in the foot or cholecystitis to tip them over the edge into delirium and so it's very hard to have a decision-making conversation with patients who are ill and having a hard time with their cognitive function additionally it's scary to be in the hospital with an illness and the hospital environment moves very very quickly and so getting consent to be in the study was a real challenge we had this wonderful woman who was in her early 90s who also came in with one of these big aneurysms and we're like oh this is a perfect person for our study she used the tool to come talk to her about whether she should have surgery and my research assistant went in to visit her and gave her a little brochure about being in our study and she looked at the brochure and she said oh Dr. Shorsey I love Dr. Shorsey she came to my sister's living home and she gave us a lecture she's just great and my research assistant said so will you be in our study she said oh no I couldn't it's just too scary this acute setting was really challenging one thing that was really a big stumbling block that we didn't anticipate is that surgeons struggled to make a recommendation they had this idea that their job was to put the options on the table and it was the patient's job to decide and so as we were teaching them how to use this tool within our contextual framework about eliciting preferences and then suggesting treatments many of the surgeons said I can't make a recommendation that's not what I do you know we can all say bad things about surgeons that's not hard to do but I think that comes at a very genuine place which is that they wanted to respect autonomy but didn't get that by abandoning people to their autonomy that was actually not helpful as well and that what we really need to think more about is relational autonomy the other thing about the surgeons is we made a very clear study design choice that to be in this study you had to have a choice between surgery and something else and that was determined by the surgeon and that that actually takes out a whole bunch of choices that probably exist but just don't exist in the surgeon's mind furthermore some of the choices the surgeons decided they thought were a choice would be something I might not say as much of a choice so one cardiac surgeon went in to talk to a patient about a cabbage and he said well you have a choice of staying in the hospital and having surgery on Monday or you can go home and have surgery on Monday so I do think that there are certain surgeons who actually don't see the existence of a choice and for whom it's going to be very challenging to use this tool the thing that probably got me up against a wall the most as far as how to proceed forward is this issue of how do we measure what's a good decision and if you look at the decision science literature people are really fairly obsessed with this decisional conflict scale in a way that I would say is disappointing at best the problem with decisional conflict doesn't have good face validity in this setting meaning that as a surgeon I could come up to you and say you know you have this aneurysm and if I don't operate on you you're going to die and you would not have much decisional conflict or regret about that decision and yet you might not be very informed so I'm struggling to sort of characterize what is a good decision particularly in a group of patients who aren't all predicted to die meaning that there's a wide uncertainty about who's going to do well and who's not going to do well and that's our frail and ultimately have a shortened lifespan ahead of them and then the last thing is that the tool didn't do two things that it needs to do and the first is this idea of breaking bad news I mean that in order to have a conversation like this patients need to have some sort of shot across the bow or awareness that this is a really bad problem and if you're just sort of chugging along at home and managing all of your chronic illnesses and then suddenly get a sequel volvulus or perforated duodenal ulcer or some tricky problem it's not going to necessarily occur to you that this is a life threatening or life ending problem and without that shot across the bow it's very hard to contextualize these choices into something that is you know gets you into that state of being really thoughtful about it so in the future in our version 2.0 we need to teach surgeons to do this breaking bad news and then the last piece is that while we tried to teach surgeons phrases to encourage deliberation for example we told them after they presented the choices they should ask patients and family members well what do you think about all of this and surgeons could do that but they weren't so great at listening to the answer so for example you know one surgeon was talking to a 92 year old woman about whether to have a colectomy for her colon cancer and at the end he used the wonderful phrase that we taught him what do you think and she said well her daughter said let's live as long as possible and he said oh great let's do surgery and the problem was that he didn't listen more about what that meant to live as long as possible what was that like how did they think about that what was valuable to them and so in the version 2.0 we're going to have the surgeons right on the bottom of the paper what is important to you now because even if the surgeons can't wait long enough to hear what's important to the patients the fact that they take the paper or use that paper or use the graphic aid as a way to have a conversation with their family or other health care providers will allow them to start thinking about what their preferences are so I would be remiss to not mention my really fantastic team particularly Toby Campbell who is doing best case worst case in his clinic long before I ever showed up he's the real genius in our team so thank you very much please questions hi Gretchen quick question two questions really firstly about patients and did you find that I often find in fact that patients look at the best case scenario and put themselves in the best case scenario picture and it's much harder for them even with the information you provide to actually consider that they could even feature lower down the scale that's the first question the second one was I was impressed that you even managed to get all these surgeons to agree that they could participate in such an intervention it's a serious question I wonder how you brought everyone together to even consider that this is an issue yeah so the second question about how did I get surgeons to want to do this surgeons hate to operate on people who didn't want an operation right this scenario I gave you the story I gave you at the beginning on top of that I think many of us feel that we are providing care at the end of life that really isn't value concordant that there's a lot of suffering and very burdensome interventions like surgery that happen right before people die so that is the downside of having to do an acute care project I mean it's really hard to enroll people in the acute setting the whole reason we did was that's how we could get surgeon buy-in the second piece about patients always think of themselves in the best case scenario it's great I think that idea behind showing them what is possible is that there will be some people for whom best case scenario is not valuable and those people should choose a different treatment option so that's the first group that you're looking for but I actually think and please don't tell the surgeons this is what people will do is they will go for surgery hoping that they're going to have the best case scenario outcome but what will happen is they'll end up having the most likely or the worst case scenario and that will be more recognizable to them earlier on and so rather than sort of prolonging things after surgery will more earlier recognize and they'll say hey what about that palliative care option I'm interested in that our family members told us they loved knowing these most likely and worst case scenarios they said we hope for the best but we felt very well prepared in case these other outcomes occurred can I ask a quick follow-up question did you study whether the patients altered their decisions based on the intervention tool that you provided them and that it changed yeah so to do this study we had to get the surgeon and the patient to consent to the study before the surgeon had talked to the patient about what options were so the patients hadn't made a decision and they hadn't had a conversation things move pretty fast in the hospital there's a lot of need to get things done and so there was no way to test what their decision was ahead of time because they didn't know there was a decision at all yeah two quick questions I praise your efforts in trying to increase the primary palliative care skills of surgeons and physicians in general I was just wondering have you ever thought about if the surgeon is the right person to do this in a busy surgical clinic and could this be a role of increasing interdisciplinary clinics in surgery of having a palliative care clinician do this so that even in the if they choose the surgical option where the best case scenario is maybe not doing well in the so I mean you don't have to be a surgeon to use the tool every time I give this lecture to somebody to a group who's not surgeons I get exactly this question the surgeons never ask that question and I think that that's a very legitimate possibility I think that there are times when these decisions need to be made and there's nobody around but a surgeon I think that if I just wanted to be a really awesome technician I would have been an aerospace engineer and what I like about being a surgeon is I get to be a technician and somebody who takes care of patients and not that all surgeons are that way but I think many surgeons are that way and would like to be involved with this so Gretchen this is probably another one of those questions that people ask all the time but it almost seems sort of like a stereotype question but did you then thinking about advanced directives as part of the intervention like hard wiring that people should say who their decision maker would be afterwards a double power attorney you live and will that kind of thing or I'm sure you thought of it so either you did it or you intentionally decided no that doesn't work we're doing something different here yeah it's so it's really hard and very time consuming to teach people new things when I told Bob Arnold that we're going to get two hours with a surgeon he said no you need six hours and then when I told Victor Montore he said two hours you need to do this in five minutes and so while there are all these other things we would have really liked to teach it it's just not enough time thanks Gretchen