 Now my pleasure to introduce Dr. Peter Eubel, who I first met 21 years ago when we were both ethics fellows here at the McLean Center. Peter is a physician and a behavioral scientist whose research and writing explores the quirks in human nature that influence people's lives, the mixture of rational and irrational forces that affect health, happiness, and the way society functions. Peter is currently the Jack O. Blackburn Professor of Marketing at Duke University and also serves as a professor in public policy, specializing in health policy and economics. His research explores controversial issues about the role of values and preferences in healthcare decision making from decisions at the bedside to policy decisions. And he'll speak today on lost in translation communication breakdown and shared decision making. Start by telling you, mainly to tell you stories. And if you put enough stories together, enough anecdotes that data, right? Starts with a patient who was in a study of ours where we audio taped encounters between men newly diagnosed with localized prostate cancer and the urologists actually during the visit when they were told they had the cancer and often which by the end of about a 25 minute visit they had decided how to treat it. And this is a quote from that encounter. The urologist says to him, so we took 12 cores out of your prostate. Out of those, there were three cores that had cancer in them. The percentage of the cores was cancerous probably low, under 30%. So, you know, third of them had a little cancer. Three out of 12 says there's probably not an extensive amount of prostate cancer in your prostate. But we should talk about different treatment options. Now, this is a story I tell in the book Critical Decisions. When I'm done, I'm actually going to hand out a couple of copies to circulate around because I think this is of anything I've written. This is by far the most embedded in what I learned here in my time at the McLean Center. This is basically a book about clinical ethics. And one I want to kind of push us, I want to push the field a little bit. And I think, and part of what I'm talking about today, the goals I have to talk about are some of the themes I talk about in the book. And then I feel like we won a battle about convincing doctors that patients have a right to participate in their medical decisions. We haven't won the battle about making that happen the way it ought to happen. And so I want to discuss these challenges of going that last mile from respecting patient autonomy to actually learning how to work together to make decisions. So this first case illustrates one challenge. This physician went right from the delivering the bad news to saying, hey, so it's time we talk about treatment options with absolutely no time for this patient to absorb the bad news. He'd just been told he had cancer after all. Now, when we as a research team got together and started looking and listening to these audio tapes and coming up with a coding scheme, we had a meeting about this and I brought up this whole problem about, you look at the delivery of the bad news and this failure to recognize emotion. One of my collaborators happened to be a urologist said, well, it's not like they're getting bad news. Now, from this urologist's perspective, localized prostate cancer is a pretty very treatable diagnosis. One that, and this came through on a lot of the audio tapes, the physicians would say, you're going to die with this cancer, not of the cancer. I happen to think when you say that phrase to patients, it's a clever turn of phrase. I happen to think all they hear is the word cancer. But I felt like this is a failure to really see the world through your patient's eyes to be able to perspective taking here to know what they're thinking and feeling and to think that just because you know through years of clinical experience that this is not bad news doesn't mean that the patient feels that way and that when you don't give them time to kind of absorb that, it's already the beginning of communication breakdown and how are you going to come up 25 minutes later and make a good decision together? That's problem number one. Why does this matter? Because a lot of times the right choice depends on patient preferences preaching to the choir. Next slide. Too often, I think we don't know how to involve patients in their decisions and it does start with this failure to recognize emotions. It goes on from there. It's that we often forget that we went to medical school and residency and fellowship for many years and learned a brand new language, a language our patients might not know. And I'm going to tell you this is what happened in that next encounter a little, basically a minute, less than a minute later. You know, we also grade prostate cancer and how it looks under the microscope. We give it a score between six and ten. Six is what we consider the most low grade. Just abnormal enough to call it cancer any less than that. We couldn't call it cancer just enough. And all the way up to ten, which is very abnormal looking, is more aggressive. The patient at this point says, I would have thought one would have been the lowest score. And yeah. Continues. Low risk is Gleason 6. Intermediate is usually seven. It's either three plus four or four plus three, depending on how it looks under the microscope. And then eight, nine, and ten are all high risk. So yours was an intermediate risk. It's in the middle. It was three plus three and three plus four. Just enough of the atypical cells of the grade four to make it three plus four, which means your intermediate risk if this, this is partly hilarious and partly incredibly depressing. Really, right? Because this is, this I think is where we, we kind of won. And we convinced this, this physician clearly knows that patients deserve information, right? They, they know it. They know that you have to inform patients, inform consent, blah, blah, blah. But it has no idea how to do it. And this was not atypical at all. So it's really earnest efforts to educate informed patients, but lost in a, in translation lost in a sea of jargon and an ability, inability to take the perspective of the patient so they can understand their decisions. Now, so partly we have to start by communicating information more clearly to patients, recognizing what they're thinking and feeling. We also have to understand when there's important decisions to be made where they have to be involved. We'll tell you about a story about a 43 year old woman who had a two centimeter tomb in her left breast. She was an active decision maker, actually a health administration background in her life. Her spouse was a physician. They actually, I know last year's winner of the big award that Peter Singer won. I forget the name of the award already, but yeah. But Jack Winberg, the guy I won last year, was one of the people who started this whole field of decision aids. This couple went through decision aids to help them learn everything they could about breast cancer before making decisions. So this was a very informed, activated couple. She opted for a lumpectomy. Then she went into the operation and they had to take a sentinel node biopsy. So you look at two lymph nodes and see if the tumor has spread into the axilla. One of them showed a one centimeter tumor. Now three weeks earlier it had turned out there was a randomized controlled trial published, I think either in JAMA or in Franklin Journal that had shown they'd taken half the people and when they found a positive node they'd go take, they'd remount the rest of the axilla. In the other half they just left it alone. Many years later no difference in outcomes. So it kind of looked like there was no need to go any further. But halfway through the operation the surgeon calls up the husband and said, well we found a positive node here, which by the way positive is bad. And asked the husband, should we go in and get the rest of the nodes? And I guess this is where I'll tell you what that husband felt like. I felt enraged because I knew that that was the thing we should have discussed before my wife was anesthetized on a table and couldn't be part of the decision. And so I was put in the position trying to figure out whether she would want to wake up, hear about the options, and then if she decided to have more surgery have to go in on another day when she hated the idea of going under the knife or whether I would make up the decision right there without her input. I pushed back on the physician. I said, well I thought there was this trial that came out blah, blah, blah, blah. Again how many patients or spouses could do that? And he pointed out well yes but you know I know that data really well. In fact I helped analyze it and you know Paul is a little different than the patients that were in that trial so I don't think it really applies to her. Now I tell a number of stories in the critical decisions about how in the history of breast cancer treatment it's all been about every time they've tried a less aggressive surgery you find out outcomes are the same but this one they hadn't gotten quite specific enough. I had to make that decision. I decided to have, I knew he was just going to talk her into lymph node, you know further lymph node dissection if he woke her up and had a chance to talk to her so I said to go ahead and Paul is a wonderful enough wife she told me I made the right decision. She's trying to make me feel good. But awful position to be in right and it was one of several that we had where they're I'm not going to tell you about all of them but basically we had all these situations where they didn't talk to us about the options that where they were I'd say what Wendburg would call preference sensitive decision and nobody engaged us in this and if I wasn't so obsessed with this topic I wouldn't have picked up on it including things like a sixth week of radiation that really has a good impact on tumor recurrence but an even bigger impact on the likelihood of local fibrosis but it was just standard of care and so I think what we need to do I might actually keep on time. I think we need to know that the last mile in ethical decision making that is in helping work in having health care providers and patients work together to make decisions is really about communication more than it is about convincing people about the importance of autonomy. In fact if I was going to say I'd say any important medical encounter I'd think they'd be great if there were two things that the physician asked in those encounters one is okay now I've said a lot to you I'd like to hear in your own words what you just heard from me how about you can't read minds right and a lot back a lot of us are we get into medical school because we have no social intelligence okay so ask the question then you'll know what they think second thing is once you realize now and then that they understand what's going on you say okay now that we we're on the same page here tell me what you're feeling tell me what feels important to you it's all it takes I think that is what we need to go from to really meet the ideals of clinical ethics thank you