Okay. Thank you. And thank you everyone for joining us today. We're very excited and hope you'll enjoy today's program. My name is Brett Fortune. I am the chair of the Public Health and Healthcare Delivery SIG at AASLD and will be one of the moderators for today's program. I am joined by my co-moderator, Dr. Manisha Verma, who is currently the director of research at the Department of Digestive Diseases and Transplantation at Einstein Healthcare Network in Philadelphia, and as an assistant professor of medicine at the Sidney Kemmel Medical College. She is also our secretary for our SIG, and we are delighted to have our speaker for today, Dr. Arpan Patel, who is an assistant professor of medicine at the David Goffin School of Medicine at UCLA. We are excited to present Dr. Patel's work and has been a leading voice in this important area with much enthusiasm, and we believe we'll learn quite a bit today. And just to remind for our attendees that there will be a Q&A session at the end, and please put your questions in the Q&A section so that we can address them or the chat function. Otherwise, very excited to hear the presentation entitled Gaps in Advanced Care Planning at Transplant Centers, A Call for Action. Dr. Patel, thank you for joining us. Thank you, Dr. Fortune, Dr. Verma, and AASLD for giving me the opportunity to give this talk. It's really a distinct pleasure for clinicians and researchers in this space to be given a platform for such an important topic. So I'm going to go ahead and start the presentation. So I have no conflicts to disclose. I'm going to go through a few objectives to this talk, just to provide a nice overview and framework. You know, the first thing we're going to do is talk and provide an overview of what advanced care planning is and present its relevance and its importance to patients with advanced liver disease, which we're going to define for the purposes of the talk as predominantly patients with decompensated cirrhosis, though it also applies to patients with hepatocellular carcinoma and other seriously ill populations. We're going to spend some time talking about the specific gaps in advanced care planning that patients with these patients experience at liver transplant centers, but I think some of the lessons that we will take away from this can be applied at non-transplant centers as well. And then finally, we'll have some discussion as well as a presentation of strategies and best practices that transplant centers and non-transplant centers can use to promote advanced care planning, both at the patient provider level and at the system level. Throughout the talk, I'm going to be highlighting some big points. Those are ones that I'll put in red and trying to hopefully break down some of the misconceptions that some of us may have about advanced care planning in our community. So I'm a qualitative researcher. I perform interviews with patients and providers. And so what speaks to me a lot regarding this topic is the direct quotes that I have from colleagues and patients and caregivers about these perspectives. So I wanted to share with you some unpublished quotes from few transplant clinicians. So the first is advanced directives are not very helpful because you would never want to exclude a care from a person on the presumption of what might happen in the future. A second quote is they're not easy conversations referring to goals of care conversations. And I think at least from a personal level, I'm thinking he or she is doing okay. I feel sometimes that if the event hasn't happened, then the discussion about it may be uncomfortable. And the last quote is if we tell them about the options of end-of-life care, they may think to themselves, hey, are they really trying to take care of me or are they waiting for me to die? So I share these quotes because first off they're real. They came from interviews and I think they share with us some of the unique perspectives that we all have regarding these conversations. What I'm going to hope today to show you is that some of these come from misperceptions of what advanced directives are in their role. Some of these perspectives come from a discomfort from initiating the conversation during specific periods in an illness trajectory. And then some of them come from just a genuine fear about how patients may react. And so hopefully throughout this presentation, we can start to really name these issues and try to think about solutions and how to, how we can fix them. So it starts, we start off with the definition of what advanced care planning is. And the definition on the right comes from a Delphi panel, basically a consensus that was reached by several different clinicians and experts in this space. So advanced care planning is a process that supports adults at any stage, at any age or stage of health and understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal is to help ensure that people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illnesses. So essentially the goal of advanced care planning is to make sure that the type of care that a patient receives at, you know, throughout their illness trajectory and at the end of their life, it's consistent with what they want. And the figure on the left articulates a few components of advanced care planning, which we're going to spend a few minutes talking about and teasing apart. Some of these have a lot of overlap. Some of these are distinct, but we're going to go through briefly some of the best practices involving each of these elements, which are values and health goals, prognosis, healthcare preferences, selecting a surrogate decision maker, and documentation. Wanted to mention or highlight a recent guidance clinical practice update that came out from in the AGA in clinical gastroenterology and hepatology. This outlines a few best practices for advanced care planning. The two that involve evolve ACP are making sure that prognosis is evaluated by providers during routine visits and sentinel events, and that goals of care discussions can be had during sentinel events. These events are defined and but not limited to during hospital admissions, initiation of life, supporting therapies before surgery, onset of complications, and when patients are having new or changes in their transplant eligibility. So, at the at the heart or at the beginning of advanced care planning is having very honest discussions with patients about prognosis. There can sometimes is not a shared understanding of what prognosis discussions can be like. Some people think of them as sharing numbers with patients. Sometimes we think of just sharing one type of event that happens, but an honest discussion of prognosis should include ideally a discussion of both good events that happen and good events that happen, positive events, as well as events that are not anticipated. A framework that I really like using is called best case worst case most likely, and I'm going to just share with you a way that we use that I use this for my prognosis discussions, and the advantage of using this as opposed to numbers is is based on an observation from the surgical literature done by work done by Gretchen Schwarze, which shows that patients respond to narratives a lot more than they do to numbers. So, I'm going to share an example of a patient who's in the hospital who is really losing their window of getting transplanted. So, I would I'd say we hope for the best, which is that as your liver worsens, you would be able to stay healthy enough to receive a transplant. We should also be prepared for the worst case, which is that you may be too sick to receive a liver transplant. I think the second situation is the one I'm worrying about the most and the one that I feel is most likely to happen, even though I wish it was not the case. So, what we're doing in this very brief few sentences is sharing to patients basically two different pathways they can go down, and patients actually in many different circumstances respond better to just understanding a story more than understanding specific numbers, although not all patients are the same, and so I find this sort of framework useful for discussing prognosis and view it as consistent with what best practices are. Another element of advanced care planning is, which is also kind of misunderstood, is clarifying a patient's goals and values, and what we're really trying to do is understand what quality of life means to them and in general what matters to them. They could be pretty broad questions like, given the information we discussed, can you tell me what's important to you? What does a good day look like? But, you know, in the context of specific events that are happening, such as changes in transplant status or even before patients are eligible, they could be framed around the idea of transplant. So, you can ask, what would your goals be after receiving a liver transplant? And a patient might say, you know, I want to make it to my son's wedding or I want to make sure that my loved ones are taken care of and they can retire well. You can also ask patients, what would your priorities be if your condition were to worsen but a new liver was not an option? And a lot of patients say, well, I would never want to be a burden to my family. So, understanding that these specific goals and values that you elicit from these conversations are actually going to be a critical underpinning of the way that these conversations go across the patient's illness trajectory. Now, I want to share a brief words about preferences. So, I think this is actually what many people believe advanced care planning is or advanced directives are. It's a discussion about DNR status, discussion about DNI, you know, patients come in with advanced directives that have this written over it. We, when patients are, we think are pursuing futile care, we try to have a DNR discussion and convert them to DNR. But I really want to shift our perspective and thinking about, not thinking about DNR as the goal of an advanced care planning conversation and not, may not even come up in most advanced care planning conversations unless we think those types of decisions are going to be made. What I want us to start thinking about and the community to think about is how we can use our patient's values, goals, and understanding of their prognosis and illness trajectory to make and help them make choices about their preferences. So, whereas a patient might come to us and say, you know, I never want to get dialysis, we don't say, well, that's crazy, you're getting a transplant. We say, why, why don't you want to get dialysis? What does that mean to you? And would you understand kind of what that decision means in the context of your overall care? And I think that when we broaden and become more intellectually curious about what that decision is and understand the context of it, we can better make select and help select the right choices for our patients, their caregivers. Probably the minimum we would hope to expect in any advanced care planning is helping patients make, select a surrogate decision maker. These can be synonymous with durable power of attorneys or healthcare proxies in other states. It's important to realize that a surrogate decision maker who makes decisions for you when you're incapacitated may not be a patient's caregiver, even though we sometimes assume that at transplant centers. And it's important that we try to select surrogate decision makers before patients lose capacity, which in our case often happens when patients have avert hepatic encephalopathy. A question I ask patients all the time and, you know, we can do to help establish surrogate decision makers is asking, asking them, who would you want to make decisions about yourself if you can make them for yourself? The last part of advanced care planning is documentation. So depending on the states, a state that you're in, some of these rules and regulations may look different, but there tends to be differences between just documents where a surrogate decision maker is selected, which are at the top, living wills, which could include documentation about surrogate decision makers and specific preferences, and then post most DNR forms, which are physician or medical orders that actually outline preferences and have to be followed during emergency settings. A lot of advanced care planning and the documentation and preparing them traditionally had not been reimbursed prior to 2015, but now there are CPD codes that can be used for reimbursement of this activity, which can be used to as an incentive to have these conversations. So I wanted to step back for a second and just say that this sounds like a lot, but I think it's actually what we do, what we actually do a lot of this without having a framework for it. And so part of this conversation, hopefully we can continue having is trying to adjust what we're already doing and build in a framework of advanced care planning. But I thought it would be helpful to just go through the different components. This is a really interesting and helpful continuum that I took a look at a few months ago, which I think is helpful, which is trying to not put all this pressure of a conversation in one, a pressure of advanced care planning in one conversation, but thinking about it as a patient gets sicker, what sort of things you want to think about. So when patients are coming to you for the first time, you might introduce concepts like surrogate decision maker and the concept of of advanced directive, but as they get sicker, you start to have more conversation about goals of care. And as the decisions become more and more eminent about certain life supporting therapies like dialysis or DNR, you, we can start to think about making those, those pivots towards those conversations and throughout the entire time, making sure that patients stay aware of their illness and aware of their prognosis along with their caregivers. So I thought this continuum was pretty helpful. So the first point I just wanted to emphasize from all this is that ideal advanced care planning is more than just advanced directives and involves iterative discussions, which often involve, I would argue for our patients' goals of care, because we want to make sure that when we're talking to seriously ill patients, we're involving their goals and values when we make medical decisions. There's actually a pretty expansive literature that has looked at benefits of advanced care planning in multiple serious illnesses. Many of these benefits come from studies that are randomized control trials that are done in patients with advanced cancer and heart failure predominantly, but also other populations. We know advanced care planning is associated with lower healthcare use. It's increased quality of communication as reported by patients and caregivers. Caregivers know that there's less bereavement following a death of a loved one. There's measures of concordance between preferences and care delivered that's increased with advanced care planning, and patients and families have reported greater satisfaction with it. So these end-of-life outcomes that we care a lot about, and we should care a lot about, which I'll present in the next few slides, are really benefited by advanced care planning. There are actually many guidelines that support advanced care planning for serious illnesses other than liver disease, including advanced cancer, CHF, COPD, end-stage renal disease, and it's only been recently supported in a guidance, and that was recently the AGA clinical practice update, but there aren't any other major guidelines to date that have supported this and been published. So it's important to just understand the parallel that we have with other specialty groups, and I think we are quite a bit away from the type of progress they've been making. So I wanted to talk a little bit about why is advanced care planning so relevant to the care of patients with advanced liver disease. This might seem obvious, but I wanted to at least share some data with you that might make this more concrete. So there's been an increasing interest in understanding what happens to patients with decompensated cirrhosis and their illness trajectory and what the ultimate outcome is. Some emerging data from a few years ago and recently through the VA, private insurances, and Medicaid databases have shown that the likelihood of patients actually ultimately receiving a liver transplant in the United States is quite low, and this does vary depending on the insurance coverage and circumstances of the patient, but they are in general less than 10%. And the reason we should understand that as clinicians who are both either at transplant or not transplant centers is that the likely outcome for many of our patients from a population level is that they won't receive a liver transplant. So being able to prepare them for an outcome that could at its offset be likely is an important part of just providing prognosis to these patients, particularly if the likelihood of them getting transplant is low even after an evaluation. With the understanding now that transplant is likely not going to happen to the vast majority not going to happen to the vast majority of patients, there's been an increasing parallel literature and understanding the end-of-life experiences for patients with advanced liver disease. This is a graph that shows different parts of palliative needs that occur in patients with liver disease as their illness trajectory worsens. We know that a large portion of our patients have psychological burden and social isolation throughout their illness trajectory. They have intense physical and symptom burden as well as caregiver burden, which is something we don't talk about a lot. And at the end of life, almost two-thirds, if not more, are hospitalized. A very small percentage of our patients get hospice and patients often have symptoms that are at the level of advanced GI and pulmonary malignancies at the end of life. And almost a third of caregivers lose all their savings. So just to compare that 6% hospice, if you compare that to advanced cancer, it's almost 50% of patients at the end of life receive hospice. So while place of death isn't a perfect marker for end-of-life quality, I'd argue that that number probably should be higher in many cases if we're hoping to build models of goal-concording care in our population. So I think with the understanding that a lot of patients won't get transplant and they have suboptimal end-of-life experiences, it does behoove us to think about ways that advanced care planning can be integrated and tested in our population. So I wanted to pivot and talk about what we know about advanced care planning at transplant centers or just in general in the population of patients with advanced liver disease. Before I get into a recent study that we performed, I wanted to talk about what we knew about just quantitatively about rates of advanced care planning in patients with cirrhosis. So there's a few studies that have come out in non-transplant-considered patients. And surprisingly, even in these studies, the rates of advanced care planning discussions are quite low, zero to 14% in outpatient settings. One study performed by Lowe et al in the UK had shown that this rate is higher, but nearly all discussions happen within a month of dying. So really it's not as much advanced care planning as much as care planning. And in transplant-considered patients, there's a limited literature that has looked at rates, but one that recently came out in Digestive Disease and Science from UCSF showed that 0% of patients who were evaluated at a liver transplant center received advanced care planning. So regardless of what setting you're in, it does seem like the rates are quite low from a documentation standpoint, and that's something to start from. This is a recent paper that came out in JAMA Internal Medicine done by myself as well as my colleagues. And I wanted to spend the next few minutes talking about what we learned from this experience of really taking a deep dive in advanced care planning at transplant centers through qualitative methods. And the main question we were trying to understand is what is the experience that patients and providers report regarding advanced care planning at liver transplant centers? And so I'll go through one slide of methods and then our major findings hopefully can build some discussion on this topic. So we performed a qualitative study at three different liver transplant centers in Los Angeles using semi-structured interviews that were performed face-to-face. All three transplant centers in Los Angeles are very high volume, do over a hundred transplants. And we targeted two different groups, one of them being patients and the other ones being healthcare providers. The patients were all those who had decompensated cirrhosis, but we excluded patients who had advanced cancer, advanced HCC or hepatic encephalopathy. We allowed patients to have their caregivers in the room for their comfort. And we stratified them based on where they were in the transplant evaluation process, whether they were being actively considered, listed, considered too early for transplant, or if they were denied or not evaluated because of specific contraindications that were known either during their evaluation or prior to their evaluation. We also performed interviews in many different people on the transplant team, including hepatologists, surgeons, social workers, and case managers. We ended up including the perspectives of many more individuals, including critical care physicians as well, just based on the way that the study had gone through. And, you know, qualitative studies, this is beyond the scope of this talk, but they're very different in that we really let patients and providers talk. We, our language of communication is quotes instead of numbers. And so I hope, you know, from the, from these quotes, you can, which we, which we picked ourselves, you can think about a lot of the issues that come to forefront regarding this topic. And we performed 46 interviews in the healthcare providers and 42 interviews at patients. So these were the themes that came out of our study, the five themes. I'm going to spend more time talking about themes two, three, and four, but I'll go through them individually. So the first is that most patients were actually having discussions of their values, goals, and preferences. And they're typically happening outside of their outpatient visits with the transplant team. So they were happening in their home, they're happening during inpatient settings, mostly shared with family members and around the times that patients were getting critically ill. So these conversations definitely were happening and people did have opinions about it. The second theme was optimistic attitudes from transplant teams hindered discussions about dying, which I'll expound into more. The third theme is clinicians primarily discussed death as a strategy to encourage behavior change. The fourth theme was transplant teams avoided discussing non-aggressive treatment options. And the fifth theme was that surrogate decision-makers were unprepared for end of life decision-making. And this was noted across multiple different people on the transplant team, including social workers, critical care physicians, that when caregivers and patients were often incapacitated, were finally told that they couldn't get a transplant, they often were frozen and they weren't able to make the decisions very easily about what the next steps were. So I'm gonna give you some quotes for themes two to four. So this theme, optimistic attitudes from transplant teams hindered discussions about dying, really focuses on this idea of prognosis. So the fact is that we sort of share one reality of what might happen to patients, but are less willing or able to share another reality of things that might not happen. So this is a quote from a patient who's listed for transplant, quote, they're always really optimistic and say, don't worry. Of course, a lot of people don't make it up there. I think about it a lot. I don't see myself ever making it to the top of the list. I might just not be thinking positively, but I don't see it. So what she's trying to convey in this quote is that this is really on her mind all the time, that she might not make it to the top of the list, which is probably shared by a lot of our patients, but doesn't find a solace of coming to her transplant team to discuss this issue. And so I think that this is sort of one reality we present to patients is, and probably the way that we present prognosis to patients in many cases is one big deficit in the way that we communicate. The next theme is clinicians primarily discuss death as a strategy to encourage behavior change. And what this has to do with is the fact that, while clinicians do report that they do talk about death with their patients, it's often not done in a way to actually prepare them for dying. It's usually done in a context that is scaring them into doing something different because they want to help them avoid dying. And so this is a quote shared by a hepatologist. We're all very honest with them. The people that end up usually not being transplant candidates are drinkers. And we say, you're going to die without a transplant. You're going to die if you don't stop drinking. We're very straightforward about it. And casually, this seems consistent with what we all do. We sort of tell patients, we try to paint a realistic scenario for patients to help them change their behavior, to convince them that what they're doing is wrong. But what we also might be doing unintentionally is saying that death cannot happen or death is something to be afraid of or we shouldn't talk about it or we shouldn't acknowledge it head on. And sort of that relationship we have about discussing death with our patients can make it sound like something that should never happen in a conversation or something we should completely avoid entirely. And so I think also the fact that our communication is structured in a specific way regarding behavior change has to be adapted so that we're not shying away from these conversations with our patients. The next theme is transplant teams avoid discussing non-aggressive treatment options. And I think this is another one that's very familiar with many of us. This notion that patients on the transplant list or even being considered can't be DNR is a piece that comes up consistently throughout many of the conversations that I recorded and transcribed. Here's a quote from a transplant coordinator. Some doctors want to put patients on hospice because you get all these other services, but you can't both be on hospice and be listed. I tell them I'm doing everything we possibly can to save your life. If you're wanting to be allowed to go, then transplant is not for you. So I think this illustrates a really important point, which is that, you know, kind of going with the concept of preparing patients for one reality. If patients are being prepared to be on the transplant list, then yes, we could expect them, you know, to the degree that they're candidates to be aggressive about their care. But in many cases, patients might either lose their window or something might come up where they may not be candidates anymore. So not constructing care plans around that outcome, which will happen to the vast majority of people on a population level really makes it so that some of these concepts like DNR, DNI, or just understanding their values and goals to shape these conversations are just not discussed. And so some of us may think that maybe it's not the role of transplant teams to have these conversations. And we can certainly have a conversation about that. But just being aware that when we shut down these conversations, then we sort of, it gets lost in the ether and patients have to, and their families have to struggle on their own to make sense of it all. So I would say that this is something that I saw all the time with the interviews my team saw all the time. I created a map of barriers and facilitators, not just based on some of the other data that I've been getting from my qualitative interviews, but also with many of the amazing literature that's already present from many of my colleagues that are in this space. And you can see that there are some facilitators for the conversations, but a lot more barriers. The facilitators are that, you know, patients are actually quite willing to engage in advanced care planning, particularly in the outpatient setting. But a lot of times they never received a recommendation from anyone on the transplant team to engage in these conversations. Another facilitator came from a study done by Dr. Neku Frey from MGH, which showed that hepatologists actually viewed advanced care planning as largely their role. So there are maybe not even just hepatologists, but people on the team that see this as important and valued and even find this to be their role. But as you can see, many of the barriers that we face are largely on the side of providers. So whereas patients may have suboptimal understanding of their illness and suboptimal understanding of advanced care planning that they report, a lot of the barriers from providers have to do with problems or issues with communication. So providers report limited comfort with communication around advanced care planning and around end-of-life issues. They report a culture of aggressive care at transplant centers that guides a lot of their communication and decision-making. And they also report a low priority for these discussions because of time, reimbursement issues, or just other things are happening during the transplant evaluations that take precedence. So the second point I just wanted to highlight was that patients are interested in having these discussions, but the major providers are happening at the provider and system level. So what are some solutions to this? And I think this is a broad discussion. I don't think that this is a prescriptive list of things that are inclusive of everyone's perspective. So I think this is something we can definitely discuss, but here are some ways that we can start thinking about solving this. And they sort of separate at the patient and provider level and the system level. So from a patient provider level, there needs to be a better investment in training hepatologists and hepatology teams, as well as cross-educating teams about advanced care planning and goals of care communication. And I say cross-education, and we'll get into this in a little bit because specialty palliative care teams tend to be the most facile at having these conversations, but the education that needs to happen between is not just unidirectional, it's bidirectional. Palliative care clinicians may not be as familiar with the trajectories of our patients, the ways that they get evaluated. And so I think that models of communication that occur for our patients have to be adapted for transplant settings. But similarly, we can learn a lot from what we already know from advanced care planning and goals of care communication best practices. There has to be a big emphasis on discussions that occur early. And I think many of us see this in practice, when we have patients who are admitted from an outside hospital and they come in and we're kind of preparing them for transplant at the last setting and last day or so they deteriorate, they feel that when we start talking about death, we're kind of pulling a rug under them. And I think that that sort of preparation, that's a dramatic example, even though a common example, but preparing patients early for these types of decisions is the key and preparing them out of crisis settings if possible. So if we have the ability to add these conversations in outpatient visits or inject portions of these conversations in outpatient visits, I think that's the goal. And that's usually what's considered best practices from a palliative care standpoint as well. In general, I don't think the burden of goals of care discussions in advanced care planning should fall on individual people. I think that there needs to be a broad support system in place to make sure these conversations can happen. Some of that support can come from specialty palliative care teams. They can come from restructuring of people's roles at transplant centers. There can be a decision aids for having these conversations such as electronic health record templates, resources for patients to read and understand so that we're not just in many ways, just surprising them with these conversations. We can have more of a discussion about roles, but maybe the roles are different depending on the provider. So whereas a hepatologist or surgeon discusses prognosis or someone else on the team, like a social worker talks about goals and values, maybe some of these conversations can happen across different people on the team, but there needs to be a shared understanding of what those roles are, a shared mental model. From a system and policy level, I think that there are some changes that need to be done just to make sure that these types of practices can be sustained. And I think it starts with policy issues that improve or increase incentives for having these discussions. So there are CPT codes that could be used for reimbursement, which is not always applicable to all care settings. An important lever is thinking about how policy can be changed potentially at the organizational level. An example is that for VADs, for ventricular assist devices that are typically placed in for patients with advanced heart failure, in order to have that reimbursed by CMS, Center for Medicaid and Medicare, you actually need a palliative care clinician in order to receive reimbursement for it. So that's an example of a policy change that has led to a significant change in practice for a lot of heart transplant teams who have VAD availability because now palliative care clinicians need to be part of those teams. I'm not sure what the policy change would look like for transplant or whether that's somewhere we are heading in now, but just know that that's an important lever for change that we have to strongly consider if we're gonna make this a sustainable practice in our environment. And of course, guidances and guidelines that are capturing the best evidence that we have and the best research that we have, something I'm very passionate about is critical because we wanna make sure that whatever we are saying that clinicians need to do and patients should consider is something that is grounded in heart data. And so I think that that's also a priority of organizations and systems is to create guidances for clinicians. What I was mentioning before was the fact that there needs to be more skills training that's disseminated across hepatology teams, both in transplant and non-transplant settings. And these slides will be available after the talk, but I wanted to review a few of them, so a few things to consider. So it's important to have some resources and baseline knowledge of what advanced care planning looks like in specific states. There are many state-specific rules about documentation that centers should read on just to keep themselves informed. Regarding communication skills, there are best practices for specific circumstances where serious illness communication needs to be emphasized. So that can include breaking bad news, general tips on how to communicate emotional issues to patients, performance of goals of care discussions, and one that we alluded to for prognosis using best case, worst case, most likely. We'll talk a little bit more about remap and spikes on the next slide. And then there are actually much more high touch options like hands-on training and feedback that you can receive, organizations if they're part of these networks or if they have specialty palliative care groups in their university setting or in their practice setting might have access to vital talk. CAPTC, which is the Center to Advance Palliative Care, Respecting Choices. These are nonprofits that have really dedicated their entire models and existences for improving communication and other aspects of palliative care. And so I think there are resources that exist. I think they do need to be adapted for hepatologists, but we need to start tapping into them. And so the third point I wanted to make was that communicating with persons and families with serious illness is a skill that requires training and practice just like any other procedure. Famously, Diane Meyer, who's a pioneer in palliative care says that you would never want to do a procedure on someone without practicing, just like we would never ask someone to do an endoscopy on someone who hasn't practiced, who hasn't actually practiced that skill. And I think we have to start approaching serious illness communication, particularly goals of care discussions with the same lens. And I think the difference here is that we obviously do aspects of communication well, otherwise we wouldn't be hepatologists and in this practice, but we have to start thinking about a framework for doing that well and what we can improve on in order to make a sustainable change for our patients. These are two frameworks that I think I probably use on a daily basis for breaking bad news and addressing goals of care. One is called SPIKES that's on the left and the other one's called REMAP. I think if you took a step back and really thought about the number of times in a day that you break bad news to patients in the inpatient setting, it feels like it happens constantly. And even every day, I feel like I'm talking to a patient about a new diagnosis of liver cancer. Taking a step back and really being mindful about the way that you're communicating that is helpful. And I think it pays a lot forward to be mindful about these issues when we talk about patients. And then when we talk about addressing goals of care, if we wanna do it earlier than an end of life, very end of life discussion, there is a framework similarly that we should start really thinking about for our patients. One that I use all the time is REMAP and a big part of both of these frameworks is knowing how to respond to emotions and knowing how to respond with empathy. And I think that the actual skillset in doing this is beyond the purview of this talk, but I think being able to respond to emotions or questions like, oh, does this mean I'm gonna die? Knowing and being prepared for how to handle those conversations is something I think that's incredibly relevant to the care of hepatologists and the practice of hepatologists, something we should invest more in doing because I think it's very common. I took a lot of these training courses, you know, as the only hepatologist at a few places I've trained, and I was surprised that I'm probably using these skills more than many of the oncologists who are being trained with me. And so I think that this type of frameworks, these types of frameworks are incredibly relevant to the care that we provide to our patients. I would be remiss to not mention the PAL liver trial, which is being led by Dr. Verma and Dr. Navarro at Einstein. This is one study that was done, which showed that an educational intervention that infused palliative care skills was highly acceptable and effective at increasing knowledge for clinicians, particularly hepatologists who received educational intervention. You can see in the screen that over 90% of individuals found significant improvement in their communication skills and goals of care and advanced directives knowledge just from a simple module. And I think this is highlighting the fact that we need to be more intentional and study interventions that we do to improve our knowledge base and to eventually try to have it translate to patient outcomes. So I want to summarize my talk before we get into the discussion. So first is that advanced care planning is a process that supports adults in any age or stage of health in understanding and sharing their values, goals, and preferences regarding future medical care. Remember that it's iterative discussions and it's more than just an advanced directive and it's more than just DNR. There is an incredible need to improve end-of-life care for patients with decompensated cirrhosis and HCC, but ACP is really not supported well at transplant centers. And we have to know that most of these barriers are coming from a lack of recommendation to patients and they're related to problems that we have as providers in our communication, as well as the way that the systems are set up. When we think about improving advanced care planning, it's going to take a village and it's going to take a lot of different types of levers. Many of them are on the system and policy level and many of them are on the patient provider level. But ultimately, if we improve education, the way we support conversations that are setters and the way that we research this, we can really make a difference. So I think what we can do as providers is invest in communication skills training, build strong relationships with our specialty palliative care providers, building that cross-education and building education that's interdisciplinary that will eventually help us promote culture change. So I wanted to thank you for your time and attention for this talk and I think we'll open it up for questions. Thank you, Dr. Patel, for a wonderful discussion and really eye-opening onto the misconceptions and barriers and facilitators, particularly barriers focused on the providers and the system level, which are under our control. Given the willingness of the patients, I think it's the right time to really try to overcome those barriers. Please post your questions in the Q&A or the chat so we can take them now. We do have 20 minutes discussion, but I'll begin, Dr. Patel. I think the question on how to integrate this ACP discussions and at what timing within routine care has always challenged most of the hepatologists. It's not that they are feeling under-trained. I think that is definitely one part which we can discuss as to what we can do to improve the understanding and capability and comfort to do those discussions. But what do you think is the right timing to integrate this kind of discussion? Yeah, I think that's a really great question. Because they're iterative, it's kind of hard to kind of do it all throughout every single step of the way. One thing I'd like for us to turn our attention to is this concept of sentinel events, which is in the AGA clinical hepatology update. So the sentinel events being when patients are denied for transplant, when they're getting admitted to the hospital, when they're in the ICU and receiving life-sustaining treatments, and when they develop hepatic encephalopathy. So there are specific periods in their illness trajectory which may be good opportunities to talk about goals of care, which I think are pretty on the minimum level. Those should be situations. And I think building a structure around having those conversations and a plan is appropriate. So many times, at least in my training, a lot of these conversations were happening informally between house staff and patients, and they weren't really being done in a way that was consistent. But I think that if they're structured in a way that's consistent and done with some support, potentially from palliative care teams or from attendings or social workers or whoever has the skillset to do them properly is one important step. So finding these sentinel events and creating structures around them is probably one first good step. Yeah, thank you. I think that takes me to my next question within transplant evaluation. I think that's a bigger struggle because that is the time when patients are being considered for cure, and they also have those other options of not getting a transplant, waitlisted, waiting for the time to get a transplant. So there is so much, you would say, emotions at that time among the family, the caregivers, and the patients. Do you feel that the field of hepatology should promote the concept of advanced care planning discussion, particularly at the time of transplant evaluation? Yeah, it's a real quick question because I think there's a practical aspect of fitting in so much knowledge in one visit or even multiple visits and so many priorities. I'd love to get your opinions about this too. I have always felt that the best time to start thinking about a discussion is maybe potentially before or just after deliberation, and using that as an opportunity. Once you kind of know what direction a patient is going in, potentially using that as an opportunity to have these discussions and recognizing, it's still very emotional. So maybe taking it in pieces after that deliberation might be the best approach in doing it in a structured way. I've been in some situations at some centers where I've trained at a few centers that they sort of send a letter to patients, and that's kind of it. And so I think that even having a structured communication after deliberation might be one relatively good opportunity to start thinking about how to put in advanced care planning. But I'd love to get your perspectives, both of you, Dr. Forch and Verma, transplant centers as to the way you guys think about opportunities to inject this in. So maybe I'll go first. Go ahead. You go ahead. No, no, go ahead. No, no, no. No, I was just thinking, I think I feel we have had mixed opinions from different providers. I mean, I've been asking this question for a while and there are mixed opinions. I think the benefits sometimes outweigh the risks. The benefit of having either a palliative care consultant or a provider, a certified nurse practitioner or someone build a relationship at the time of evaluation, not exactly at the same visit, but within a month, so that they build some relationships, patients understand and are familiar of the terms palliative care, because in that way you are avoiding their fear of this person now coming in to also serve them in addition to the hepatology field would be beneficial. But I know there are system barriers which we really need to overcome. So the discussion is open. The field is open. I would rather support early integration. As someone, Nabil, you have posted a question. I'll just read through that many Oncology Society guidelines including ASCO, which is American Society of Clinical Oncology recommends early referral to palliative care in parallel with active cancer treatment. Perfect. So what do you think it would take care for? It would take, what do you think it would take for hepatologists to incorporate this same approach to patients with decompensated cirrhosis? So, so maybe Brett, why don't you take this question first? Yes, thank you. And first of all, thank you, Dr. Patel for a wonderful talk. And absolutely many, many things to address. And I think really appreciate your voice and the group that you're working with and including Dr. Verma's voices on this important subject. I think to get to the original question about timing, you know, it's amazing when you see a patient whether it's in consultation on the inpatient ward or in the office that they don't even have the concept of what cirrhosis really means. And I try my best, obviously getting to the point of the uncertainty part that, you know, especially in the setting of decompensation, we definitely need to do just a better job as far as the definition of the diagnosis in the first place, which I think is point number one. Point number two is definitely when you have a relationship and you get, as you were saying, Dr. Patel, kind of their perception and where their goals and aims are valued as far as their care go, I feel, and this might be a little bit of a, you develop your own kind of feel for it. And clearly we need to improve on a universal scale. If, you know, is this something where we need to bring it up sooner or later? I think, you know, to the point from the question from Dr. Wahad is basically, you know, can we do something formal pathway, care pathway as oncology? And the question is potentially, but this requires infrastructure, resources, costs, et cetera, and to be fair, palliative care is extremely under, you know, under power, you know, with personnel and the burden of handling liver disease in addition to heart failure, in addition to cancer, in addition to other in organ diseases is quite challenging both for doctors, nurse practitioners and social workers. And so I feel, I absolutely agree with this kind of multi-pronged approach. This, so it's not the whole provider burden is on one group, but more kind of a seamless kind of circle of multidisciplinary care to address these concerns so that it doesn't overburden those extra support layers as well. So, but that would be how I would kind of see it on, on our end. You know, I see so many commonalities just on the topic of advanced cancer between liver disease and advanced cancer, but I also see a lot of differences. You know, in advanced cancer, there is a lot more of an understanding of prognosis and there is uncertainty, but there's also a really shared understanding between palliative care teams and oncology about that, about what can happen to patients. I think that that sort of uncertainty aspect in transplant and what happened, like people get better and they get worse and they get better, that part is very uniquely different. And I think a lot of times in oncology, they sort of separate out palliative care and specialists and especially oncology, they're kind of two different teams, but there's a lot of hesitance to do that in transplant because of the fact that hepatologists and clinicians are so tied to trying to guide patients towards what's going to happen next. And I think that that is a big difference and why really helping teams, improving the way that they discuss prognosis and making sure they're discussing both possibilities might be something that clinicians own outside of specially palliative care teams. And I think it has to be consistent. You know, you can't say, you know, send someone to specially palliative care and then them talk about something and then go back to the hepatologist and say something else. It has to be a really consistent message. So I think that's kind of the differences I see between oncology and hepatology is that this prognosis discussion and certainty is structured very differently. And to add to that, Dr. Patel, I would also add that, you know, and you'd mentioned this, one of the additional challenges we have in cirrhosis is the cognition disability. So, you know, and that may be more where we need to learn from the geriatricians and, you know, how do we deal with those that have cognitive defects because that's an additional challenge that our cancer team may not necessarily, you know, take on as much as we may. And I hope we've been injecting as much of this as possible, but to really also support caregivers who are dealing with a lot of this. We know when patients are not able to share their voice, it's really the caregivers. Like they, sometimes they know everything about what's going on. Like they're taking notes, they're burdened, and they're the ones that we have to also respect their voices and wishes too, just as much as the patient and supporting that along the way. Sometimes, you know, like Dr. Porchua was saying, we have such intimate relationships with both the patient and the families that it's like sending that away to another team is hard and maybe they don't trust people the same sort of way. So I think that some of those interactions make, again, transplant a little more unique. Yeah, I agree. I think that brings us to the common point to bring our hepatologists more training resources so that they feel more comfortable and this becomes their part of norm. Of course, there is a limit to what's already trained people or we are expecting them to learn more or practice in a different way. So there will be a certain limit where we are like, that's it. Now I need to involve the palliative care consultation, but certain basic primary palliative care skills which distinguish themselves from specialty palliative care skills should be set apart and probably hopefully ASLD would have certain guidelines to work on those primary palliative care skills among our trainees and already trained hepatologists. So these can be used as a need point for regular learning and of course, making sure that you are able to serve your patients and caregivers in a more appropriate way. Yeah, and I think like the hepatology community has like an incredible capacity to learn. Like 10 years ago, we had different hep C treatments. Three years ago, we weren't even talking about AUD. Like we do a lot of things without putting a name to it and we grow a lot. And I think a lot of our communication that we do is already very centered towards a lot of the elements we see in advanced care planning. I think it just has to be done in a framework that's intentional. And I think we can do it as a community. So I also view hepatology is different from other communities for that same way is that we're changing all the time. I think that's what makes this field exciting. That takes us up into the next question we have in the Q&A. Do we need to develop and train new teams related to ECP in end stage liver disease? Yeah, I mean, I think all of us would agree with that from this conversation. I think that the question is how to train them and what takes priority, right? Does this take as much priority as training people up about the basics of transplant? And I think that, I personally think it does if we're gonna serve a population that's even bigger than just the transplant evaluated patients. I also think that we can't incentivize that without also it coming as something that's valued from the organizations and valued from a policy level as something that's important too. So I think that it's something we should value but we should push systems to change to value it as well. Correct, and I think it takes us to the point for value-based care. I mean, there has to be, of course, we are asking the hepatologists to deliver more care. We really would like to add some more coding structures so that this is considered now a part of your holistic care and there is better reimbursement related to this kind of approach versus just a provider-centered approach. So that's really wonderful. I know we are running out of time but if there's any other questions, please type in your chat or Q&A, but I had one other point which I would highlight that Dr. Patel has put together the resources which takes us back, but in case you are individually interested and would like to expand upon certain skills for advanced care planning in primary palliative care world, there are resources which are available live and they're free. And some of them do cost, of course, that's different but there are definitely a lot of free resources which are available for clinicians to improve their skillset on this important domain which is going to become more and more value-centered and of course, patient-centered. Okay. Looks like there's- Dr. Porchuk, yeah. Okay, I didn't see. Okay. So Dr. Nakafeh's amazing presentation as usual. We discussed a lot about the need to grow our partnership with palliative care clinicians to improve ACP. What are your thoughts and approaches on how to incorporate transplant surgeons into this critical area, particularly given your research findings? Yeah, I think that's great. I think what makes actually transplant surgeons easier is that transplant's a team sport already. We talk to each other all the time. I think it can be somewhat sensitive to have conversations about us not offering a therapy that they're very well-versed in and support. So I think that part of the challenge of engaging the surgery community might be the fact that we're potentially talking a bit way about giving away a procedure that they do and that might create a perception that we don't think that they could do it. And I think that that's just a real challenge that we have to engage with. And I think that the solution is maybe showing cases where it went well, maybe where palliative care clinicians' involvement went well and learning from it and creating a shared learning environment where we can look at cases individually because that can always be our best teachers. But I think one unique advantage we have on transplant teams is that we all talk to each other. These are people we have relationships with. So I do think that the barriers to overcome are there, but I think that there are ways to overcome those barriers through just good communication. Well, wonderful. Well, as I think we're closing in on the hour here, thank you, Dr. Patel again for this wonderful hour session talking about something that you're very enthusiastic about. And we felt that this is very important to get out into the AASLD. And we look forward to hearing future discussions and follow-ups on your findings and research. And Dr. Burma, thank you again for co-moderating and having this program. Thank you to the AASLD for allowing us this opportunity from the Public Health Healthcare Delivery SIG. And we look forward to further discussions and lessons learned from this exciting topic. Thank you, everyone, and have a great summer. Take care. Thank you, everyone, for joining. Thanks, Elton. Thank you, Brett. Thank you, Dominique. And Brittany too.

advanced care planning

transplant centers

gaps

values

goals

preferences

advanced liver disease

conversations

palliative care teams