 Last up, Rachelle Bernacke is the Director of Quality Initiatives, Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute in Boston. Dr. Bernacke is also an Assistant Professor of Medicine at Harvard Medical School and serves as the Associate Director of the Serious Illness Care Program. She received her MD from Johns Hopkins and completed her residency at the University of Washington and her fellowships in geriatrics and ethics at the University of Chicago. Dr. Bernacke led a successful initiative to increase access to palliative care at Brigham and Women's Hospital and her team earned the Partners in Excellence Award for these efforts. She's also the recipient of two geriatric academic career awards from the Health Resources and Services Administration. Today, she's going to tell us more, earlier, better results from the Serious Illness Care Trial. Thank you. Thank you so much for inviting me, Mark. It's great to be part of this great group here, and thanks for staying until the end. I'm first going to start with a story because I think it's the easiest way to sort of describe and understand what we're trying to do. So I worked with a surgeon, Atul Gawande, and he many years ago wrote an article called Letting Go. It was in the New Yorker, and it was essentially a question of what can we do when we can't cure? And through writing that article, he interviewed my mentor, Susan Block, and said to her, you know, I'm not sure. I don't have that conversations at end of life. My conversations aren't that good, and I'm not really sure why, which I think is interesting in and of itself. And Susan asked, well, what questions do you ask? And he told her, and she said, okay. And so then she said, well, why don't you try these? And she gave him a list of four or five questions, and he jotted them down, and the next patient that he went and talked with, he had what I would call a really transformative experience. The conversation was much deeper in meaning and understanding, and he kind of was amazed that he had never learned to ask these questions before. And they're not rocket science questions, I'll show them to you. But I think the fact that he hadn't ever learned kind of this kind of approach is remarkable, and he went to partners and said, I think I really want to try teaching this to everyone, and I want to study it. And that's where I came in, because both Atul and Susan were quite busy. So I'm going to share with you, now we're about five or six years later, and I'm going to share with you the results of a couple of trials and where we're headed next. So we're funded by the Betty Moore Foundation and the Hartford Foundation, but I have no conflicts of interest. So I was here several years ago, and I feel like now we really have fairly good evidence in palliative care to show that early conversations about goals of care really matter and produce different outcomes. We have enhanced goal concordant care. That just means our patients getting the kind of care that they want. People have time to make decisions. They have better quality of life. That's from Jennifer Timmel's trial. She had a landmark trial in the New England Journal several years ago. They have more in earlier hospice care, fewer hospitalizations, better patient and family coping, and better bereavement. So, but even though we know that, if conversations were a drug, everyone would be getting them, right? But they're not, and why don't they happen? So what we do at Ariadne Labs is we're an implementation science lab. And what we're trying to figure out is how do we take things that we know work and make them happen? To be honest, we really don't know how to do that. We know some of the reasons conversations don't happen. They're infrequently unlimited. So fewer than a third of patients have conversations with end state diagnoses, have conversations with their clinicians. We have a lot of data from advanced cancer. We don't have data from other diseases like in primary care. But the first discussion on average happens 33 days before death, which, as someone who practices clinical palliative care for many years, that's not a lot of time for people to come to grips with terminal diagnosis and really do all the work that needs to happen before they die. And then these conversations, 55% of the time, happen in the hospital with a doctor that doesn't know them best. And then I did a lot of chart review at Dana Farber of conversations with patients. And there were some clinicians that were really fantastic and documented a lot. But for the most part, these conversations would say, patient realizes that they have an incurable disease. And if you were lucky, they would name their health care proxy, but not a lot of information. So we wanted to change that. The other thing is that having conversations can really be a challenge for clinicians. I was ever trained really how to do these conversations. I think time constraints continue to be an issue. I think now that advanced care planning is covered under Medicare. There's a billing code that may change. I think there's also varying attitudes about having these conversations. People don't want to harm their patients, and they worry about what the right time to do it is. In primary care, I think we have a lot of prognostication challenges. And then there's ambiguity about who's responsible. Should it be the oncologist? Should it be the primary care doctor? Should it be the palliative care specialist? And then we don't have any systemic way to identify who is at risk. So that may be changing, but I think it's still the norm in most places. So our program was really a multi-component program aimed to improve conversations and ensure that every patient that has a serious illness has a conversation with their clinician about values and goals. It includes tools. The first is the serious illness care guide, which is a set of questions that asks, what is your understanding of your illness now? How much information do you want from me about what's likely to be ahead in the future? Then we coach clinicians about how to share prognosis. Then we ask things about if you were to get sick or what's your most important goals. The two questions that were most controversial and that clinicians gave the most difficulty to me about were what abilities are so critical to your life that you can't imagine living without. So clinicians had a hard time asking that question. And then the other question, how much are you willing to go through for the possibility of gaining more time? So both of those questions, I think the thing that's so important about those questions is that it gives clinicians a way to elicit values without getting too bogged down in just being a menu of treatment options or a menu of procedures. We also put together a clinician reference guide. I was actually just gonna show it to Alexi because we have a section about what to say when the patient says I'm hoping for a miracle and we have actually scripted answers because a lot of people come to us and say, I don't know what to say when they say they're hoping for a miracle. So I'd love to get your feedback. We have patient preparation materials. When I did our trial at Dana-Farber, I took in this and we're asking the oncologists to participate. They were really worried about what this piece of paper said. Does this say something about the prognosis of the patient? But it's actually what I would call a little bit of a mushy letter. It says you have a serious illness, cancer, and we wanna talk to you about what matters most. But it gives them some idea that they're gonna have a conversation with their clinician and tells them to bring in their family, et cetera. And then we also found that clinicians or patients don't know how to talk to their families about this. So we give them some language of how to use this. People really like that family communication guide. I just got called yesterday. Could we put it up on the UCSF website? And all our materials are freely available on our website, which is portal.areadnilabs.org. So you can just download them and use them. Then we do clinician training. It's two and a half hours. It's basically, we bring people in. We ask them to reflect on their most recent patient with serious illness who died and to think about how communication impacted it. Either in a positive way or a negative way. And the idea of that is to really get them engaged in the training. Then we do a super brief didactic and then we actually demonstrate a conversation using the guide in front of the group. And the groups are generally small, 10 to 12 clinicians with two facilitators. And then we spend the bulk of the time having clinicians use the guide with a trained medical actor getting feedback. And it's sometimes, for some clinicians, this can be really hard, because they're used to doing it a different way. But for many clinicians, having a structure really reduces anxiety. They have no idea how to, especially in our primary care group, where a primary care clinician has an average of five patients die per year. So this is really hard. And they might not really know what the right questions to ask are. So having a structure really reduces their anxiety. And then this last part, system change is probably where I spent 90% of my time. So we wanted to have a system to screen all our patients to find out who's at highest risk of dying. So we used the surprise question, would you be surprised if this patient died in the next year? The patients that were the oncologists answered no had a risk of dying that was 10 fold greater than others. So it was pretty good, but we still missed about half of the patients who died at Dana-Farber with this. So it's not very sensitive. It's very specific, but not very sensitive, unfortunately. So we're looking at new things like machine learning to do better job at patient screening now. We put in a reminder system. It was very low tech at the time. It was an email from me saying, remember to do your conversation. And I was really worried about this because I thought it would be sort of the nag of Dana-Farber, like do your conversations. But what I found instead was that a lot of the clinicians would come up to me and say, I know that I should have conversations earlier with patients about their illness, but it just sort of falls to the bottom of the list. And so when I get the guide, we put their guide on their billing sheet for the day, it reminds me that I should do it. And when I do it, I feel like I'm being a good doctor. So that was kind of a surprise. Then they have the conversation using the guide and then document it in the EMR. We actually embedded the guide right into the EMR. And that was a fair amount of work. And then in the middle of our trial, we changed electronic medical record systems to EPIC, so that kind of messed things up. But what we really, our goal was really to have a single source of truth for having, because one of the might have fees as a palliative care clinician is you could look in 10 different places for these conversations. You could look in social work notes, you could look in a doctor's note in their problem list. And it would take sometimes 45 minutes to find this kind of information. So we've really made an effort to have it all put into one place and funneled there so that it's easier to get the information. So this is the guide. It basically starts with a, the beginning really is about making sure that you normalize these conversations, the saying that I have these conversations with my patients and that asking permission, is this okay? And also all of the things, also the other thing is that we find when we make the conversations happen earlier, which I'll show you in a minute, it really reduces, you don't have to make a decision that day. If you're having an early conversation, you don't have to have the decision and all of that's about reducing anxiety for both the clinician and the patient to sort of enter into this. So I'm gonna tell you a little bit about our results from our Dana-Farber trial and our trial in primary care. We also did some feasibility and acceptability pilots with rural patients in South Carolina and also in chronic critical illness, but in the interest of time I won't talk about those today. So we enrolled 90 clinicians at Dana-Farber. We found 72% participated. I found that getting the different disease centers to sort of compete against each other. So Dana-Farber's pretty competitive. So I told the sarcoma doctors that all the breast doctors were doing it and then all the sarcoma doctors did it. So that was good. So we had 278 patients enrolled in 131 patients died and I'm gonna show you our chart review which is a process measure and then a little bit about our patient outcomes as well. So we're looking at the frequency, accessibility, timing and comprehensiveness of these conversations. So the percent of patients with a documented conversation, the number that were in the ACP module, the median days before death and the number with values and goals included. So we saw that we had more patients. So 92.5% of patients in our intervention group had a conversation about what mattered to them about their values and goals and versus 76 in the control group. That 76 in the control group is actually fairly high compared to other published studies. But we've had a fairly robust palliative care program and also have been doing work on documentation of healthcare proxy and other things related to this for many years. So I think that's why it's so high. I think this is what I find really exciting is that we changed the timing of the conversation from two months before death to five point two months before death. So three months earlier and I think that really gives patients a lot more time for acceptance and also for closure and also practical things like doing financial documents, et cetera. So we also saw that the patients that had them in the ACP module, we didn't get it nearly perfect, but 68% in the intervention group versus 28% in the control group. And then in terms of comprehensiveness, we had 95% of the conversations that were documented had things that were personal to the patient. Like I want to be there for my daughter's graduation. I want to, some people said I wanna go to a Viking Super Bowl. I mean, all sorts of things, but things that were really important to the patient. 95% versus 45% in the control group. We also saw some significant improvements in patient reported outcomes. So at baseline, we had no differences in moderate or severe anxiety or depression in the groups. And then two weeks after the conversation, about half, there were rates of about half in the, of moderate to severe anxiety in the control group versus intervention. So we're pretty excited about this. It's under review right now. Hopefully it will be published sometime soon. And those differences in anxiety persisted for about three months in depression. They didn't persist quite as long, but we measured patients' anxiety every two months after, once they enrolled in our trial. So I think, you know, there's been a lot of controversy about this in palliative care about having conversations and how it, how it impacts patients' quality of life. And I think this is definite, you know, tells you that they're not, they're certainly not more anxious after the conversation. And it doesn't surprise us given that they have, you know, very concerning diagnosis and having that outlet to talk with their clinician about it was really helpful. So we also studied this in primary care. And I have to say we had to really adapt our program to work in primary care. And we worked with a population health group, so Care Manager RNs and the PCPs together to do this project. So we trained PCPs, social workers and RN care coordinators. And we used the same question, would you be surprised if this patient died? But we changed it to two years. And that's because our PCPs told us it was too hard to decide if someone might die in a year. And so we're just looking at the data right now to see how accurate or how well PCPs do at that. And then we had a control practice and this was published in Health Affairs this July. So this is kind of a busy slide, but I'll take you through the results. We were able to see that with 62%, we did chart reviews again in the same methodology that we did in the Dana-Farber trial. 62% of the intervention group had conversations documented versus 43% in the control group. They were more accessible in the EMR, 44% versus 3%. Surprisingly, in primary care, the conversations happened pretty early, about four months before death, so there was no change in the timing at all. But they were more comprehensive, meaning they had more values and goals documented that were important to the patient. The other thing we did was we measured how long they took. I think a lot of clinicians think these conversations take like an hour and that they can't do that. But the median time, these were self-reported times, so the median time for nurses was 26 minutes and for physicians was 22 minutes. And we actually also recorded a subset of the conversations and they were always shorter than what people reported. So I think this is helpful. 22 minutes is not nothing, especially if you have a 15-minute visit. But it's also not an hour. The other thing was that this was before you could bill for ACP. So I don't think that affected the results at all. The other thing is we didn't tell, in primary care, we didn't tell people how they should have their conversations. We said, do it however you would normally do it. And so some of the physicians said, this is the top of my skill set. I wanna have these conversations with my patient alone. This is my job. And other people said, oh, I'd like to sort of share that responsibility with a nurse and they would figure out how to do that. But what we saw is that most of the clinicians did their conversations together. So 42% of the time they did it with multiple disciplines. And I think that just reflects that these conversations are difficult and that it's often easier to share both the benefit of having them and then the burden. And then the rest, you can see the physicians had conversations 37% of the time and the nurses 20% of the time. So we also saw a $2,300 per member per month cost reduction and intervention group in primary care versus the control group for the last six months of life. So we did see differences in hospice use but they weren't significant. We had very small numbers unfortunately. We're looking at more data now to see if we can actually see if there's any statistical significance. But the prevalence of hospice in the intervention was 55% versus 40%. The length of stay was 51 days in the intervention versus 29 days. And the groups that had more than 30 days on hospice was 23% versus 7%. So I think in summary, our training program was really viewed as effective by clinicians. The conversations were done in an interprofessional way. People liked using the guide. When I first took on this project, I wasn't really sure if people would actually use the guide but they did in fact use it and found it useful. The patients found it acceptable and they also found these conversations as worthwhile. I think more patients have a documented conversation. They happened three months earlier in oncology. They're in a more retrievable place in the EMR and that the anxiety and depression scores are lower, especially for those with moderate to severe anxiety. So in summary, I'm really happy to be here. This is my email address. I'm happy to take questions or either now or over email. So thanks so much. That was fabulous. And I think there's a question coming but I wanna ask one too. I do a lot of implementation work obviously and infection control and I gotta say that was really good work. And I know how hard it is. So what do you think, I'm guessing the challenge is identifying the patients. Yes. So what is your advice for, what would you do differently or how would you identify these patients? It's a great question. So one thing about the surprise question that's really interesting is that when clinicians say no, I wouldn't be surprised if this patient's gonna die in the year. They buy in and they know they need to have a conversation. So there's, in terms of that versus giving them an algorithm that says, hey, this patient might die. We're just trying that now and I don't have the data yet to see whether it's effective or not. And the algorithm looks like it's not gonna be that much better than the surprise question anyways. Do you think that maybe expanding the surprise question, do you think this patient might, would you be surprised if this patient dies within the next eight months or nine months might make it a little bit more sensitive but maintain a high level of specificity? One of the challenges about using even a year is that once a lot, at least in oncology, a lot of our patients died before they could even have a conversation. So it's a good question, I don't know. Yeah, just tweaking the time a little bit. You probably can do it like any other dose response. Exactly. Okay. Question. Kudos, that is great work. And I love that you did it in primary care. Can you see more, is it pronounced atreus or is that how you say it? Atreus, yes. Is that, so is that a population? I'm not familiar with it of chronically ill folks or it was a chronically ill subset of people discharged from hospital. And the other question just on the relative lack of earlier asking because are the incentives less in primary care or you know what I'm saying, like it might be harder given that they have presumably a longer list of things to get through in a 15 or 20 minute visit that would fall at the bottom of the list. Yep, great question. So I would say, so atreus, so we actually trusted this both in our Brigham and the data from here is from the Brigham, but they also implemented the program at atreus which is just another healthcare system. So in terms of the second part of your question which was about in primary care. Yeah, it's a really good question. I think, you know, just in, I did almost all the trainings for oncologists in primary care and I would say that primary care really embraced this. They were like, oh my gosh, this is so important. Like I really wanna do this better. And so it's hard to say why the timing is indifferent. I think they think of this as their, this is absolutely in the core of what a primary care physician believes is their thing, you know, what they do. I'm not sure why the timing wasn't any different. I think it could be because, you know, identifying the patients that relative risk, we just got the numbers, but the relative risk of death with a surprise question in primary care is only like three-fold whereas in oncology, it's like 10-fold. So it's not as specific. Yeah. Okay, thank you very much. Thank you. Thank you.