So, our next presenter is Dr. Patel, get your slides up, Dr. Patel is a physician hepatologist at UCLA. I see Folo is giving him a hand already. He's also pursuing a PhD in health policy at UCLA as well, and he's going to be speaking with us on the role of palliative care and high-value care. Good afternoon, everyone, so I just wanted to thank the moderators first for including this topic, particularly in this session, because I think it's a topic we don't discuss much in hepatology, and I'm hoping by the end of this discussion today, we can think about palliative care as part of the discussion of high-value care in hepatology. So, this is my disclosure slide. So, as a way of showing this, I think we're going to have a pretty clear discussion about what the definitions of palliative care are, to provide pretty clear definitions of that, look into evidence of palliative care in many different spaces that include both liver disease and not liver disease, and then at the very end, the few remaining minutes, talk about some tips of integrating palliative care, principles in your practice, as well as thinking about conditions where you'd consider referring to specialty palliative care. So I do something called qualitative research. It's a type of research where we perform semi-structured interviews of patients and providers, and as part of my research, I interviewed liver transplant providers, including social workers, transplant doctors, surgeons, about their views on palliative care, and I just wanted to share some quotes, which are totally anonymous. So the first quote is, palliative care means you're asking this service to come by and see the patient because the patient is about to die. The second quote is, the minute the palliative care team shows up, most people associate that with, okay, they've given up on me. And I think I wanted to include these quotes because they highlight perceptions about palliative care that I think we all share in hepatology, and this is actually a survey study that was done in Clinical Gastro and Hep that was published in the last few months that highlights the fact that this is actually a pretty pervasive idea that we sort of put, it coexists the concepts of palliative care and end-of-life care. What I'm going to spend the next few slides describing is that this is sort of a traditional view of palliative care. We kind of wanted to move into the contemporary view of palliative care, which I'll be describing. So the definition of palliative care as determined by the National Consensus Project is a person and family-centered approach to care, providing people living with serious illness relief from the symptoms and the stress of the illness. The ultimate goal of palliative care is to improve quality of life for the patient and the family. And I wanted to highlight the fact that when we discuss palliative care, we should really be talking of it as an approach to care, not talking about it like palliative care teams or palliative care person. It's not a person, it's not a team, it's an approach to care. And so just start with that definition in your framework, and then we'll kind of move on to other concepts. So when we have a discussion about palliative care, there's that traditional model of care I was talking about, where we really consider life-prolonging care and at the very end think about palliative care. And this is actually born out of initial concepts of the hospice movement. When palliative care was starting, hospice was the only thing that would provide quality of life to patients. And what was starting to happen over time was that people were noticing that a lot of end-of-life issues were actually happening earlier in the disease trajectory for patients. And so now the more accepted model of palliative care being delivered in chronic illness is something called the early model, where at the onset of patients becoming seriously ill, we should start thinking about some of these concepts and really integrating them into the care of a patient. And so again, I wanted to just highlight one of these models is the traditional model on the top, and then the second model is the contemporary model. So what do palliative care teams do? I think that's a question that we ask all the time, you know, if they're not just doing end-of-life care. And these are dimensions of care that are specifically laid out by a group called the National Consensus Project. This is the fourth edition of the guidelines. And so palliative care teams, or palliative care in general, includes care of physical symptoms, care of the psychological aspects of care, like mental health. An important component is advanced care planning, social and cultural issues, spiritual, religious, and existential issues, and then finally, end-of-life care, again noting the fact that end-of-life care is only one component of the care in palliative care. So let's define what we think of as the common palliative care specialist, and we'll refer that as specialty palliative care. And this is, by definition, should be an interdisciplinary team. Usually consists of not only a board-certified clinician, but also a nurse, social worker, a chaplain, a pharmacist, and other parts of the care team. And really what it's trying to do is give a 360 view of all of the aspects that are occurring to a patient during serious illness and addressing that. And part of palliative care delivery includes comprehensive assessments of the dimensions on the left, care in every setting, which includes inpatient and outpatient settings. In fact, 80% of all hospitals have an inpatient palliative care consultation, and that's growing for outpatient care as well. And then, very importantly, continuity. Primary palliative care is a concept that's becoming more prevalent and known. It's something endorsed by specialty societies, which is the idea that any person who's not trained in palliative care should be learning palliative care, some aspects of that. And this is born out of the idea that the specialty palliative care model is not going to be able to provide enough resources for the chronically ill population that's growing. And one of them includes end-stage liver disease. So if we had to take this framework of value that we had from Dr. Gilad's presentation about value, we want to think about for palliative care specifically, how can we increase the quality of care? And for palliative care, that means increasing quality of life, physical and mental health, caregiver burden, and goal-concordant care. And how do we reduce costs? And that can not just mean dollars, but readmissions, life-sustaining treatment used at the end of life. And then, an important thing that we don't talk about in all of this is the patient and caregiver costs. So I wanted to highlight, and I know this is not a research presentation, but I just wanted to highlight some evidence of palliative care performed in other settings and really give you a taste of kind of what's been done in other disease groups. This is probably the most famous trial that has been done that Dr. Volk was alluding to, which is a trial done by Jennifer Temel, who's a thoracic oncologist at Massachusetts General Hospital. In 2010, she published a randomized controlled trial of providing early palliative care to patients with metastatic non-small cell lung cancer. So in this study, 151 patients either received usual care or they received early palliative care, which consisted of monthly visits with a specialist. And what they did as their primary outcome was look at, in three months, what were the changes in quality of life in disease as well as mental health, and they absolutely met their primary outcome, which was looking in three quality of life scores, finding a significant difference. And rates of depression were significantly different in the patients that received palliative care versus the ones that didn't. What was less expected was when we looked at end of life outcomes for these patients. So patients in the palliative care group definitely had lower rates of aggressive care at the end of life, 33 versus 54 percent, but one thing that was kind of unexpected from this trial that they published was that patients who actually received palliative care lived longer. That's funny. They lived, on average, almost three months longer. And this shouldn't be, you know, just to qualify that for a second, the goal of palliative care necessarily is not providing extension of life, but I think it sort of combats this notion that we have maybe as hepatologists and as specialty providers that including palliative care means that you're going to limit someone's life. This is a very important study that's been reproduced in many different ways, and now there's really a growing evidence that's suggesting that in several disease states, including heart failure and other chronic illnesses, that palliative care teams are associated with better symptom control, better quality of life, improved satisfaction with care, and less healthcare utilization, which I think already is starting to develop this picture that palliative care is associated with better value. In fact, major subspecialties outside of liver disease, including advanced cancer, congestive heart failure, COPD, and end-stage renal disease, include palliative care as part of their guidelines for management of chronic illness. So unfortunately, this hasn't been something espoused in guidelines from GI and liver societies, so that's just to kind of tell you where we are in the field compared to other subspecialty societies with their chronically ill populations. So I wanted to bring attention to the fact, now that we talked about it in other disease states, what are we doing in end-stage liver disease? And I'm going to focus more on end-stage liver disease than liver cancer, although liver cancer is an incredibly important area of palliative care research. But in end-stage liver disease, let's focus on the physical symptoms and mental health aspect of care. So a systematic review was published just in the past year that summarized all of the surveys that were done on specific physical symptoms and mental health symptoms and found that pain, dyspnea, insomnia, fatigue, anorexia, nausea, and vomiting are pretty common. And this was actually compared to patients with heart failure and advanced cancer, and the rates were actually quite comparable. And I think I know from my own practice, like I don't usually think that, a lot of people have the idea that other than, you know, complications of portal hypertension, you know, patients aren't very symptomatic. But, you know, they are quite as symptomatic as patients with advanced cancer. And the rates of depression and anxiety, which is the last part of this graph on the right, shows that they are significantly suffering from mental health issues. Something I wanted to highlight as well is the fact that it's not just patients, it's their caregivers. So a lot of abstracts at ASLD this year, including one by Dr. Oufre, highlighted the fact that if you actually take mental health assessments in patients and their caregivers of patients with end-stage liver disease, they also have significant mental health and physical health issues. Another thing I wanted to highlight, which is probably the most important part, is our significant gaps of providing good advanced care planning and end-of-life care. So what does that look like in liver disease? So in this publication that just recently came out in the last few months, they looked at advanced directives, if patients received any sort of advanced directives or goals of care discussion, and less than one-third of patients received either of them, not both of them. I wanted to highlight that two-thirds of all patients with end-stage liver disease die in a hospital or a nursing home in some sort of institutionalized setting. And if you compare that to patients with advanced cancer, that's less than one-third for patients with advanced cancer and two-thirds for patients with liver disease. Importantly, even at the end of life, only less than a third of patients receive specialty palliative care. And that's important because, you know, introducing this notion that a lot of us already think that palliative care means end-of-life care, only less than a third of us are even including them at the end of life. It really kind of speaks to the fact that this is something that's not known in our field and something that we have to start drawing some attention to. So what are some examples of palliative care that actually has been integrated in the care of patients with liver disease? And so I'm going to spend the next few slides talking about some studies, some prospective, some retrospective, that have actually shown some benefit in the liver disease population. So this was a study that was published four years ago, and it included integrating palliative care specialty consultation during the liver transplant evaluation process at Albert Einstein Medical Center in Philadelphia. So what they did is that during a week evaluation process, they had a palliative care specialist and or a nurse practitioner evaluate a patient during the liver transplant evaluation and wanted to see at six months, was there any change in quality of life, depression scores, anxiety scores, and advanced care planning. A limitation of the study is that they didn't compare patients who actually received this intervention to the outcomes of people that didn't receive the intervention. But what they did find that at six months, and you can see this on the graphs on the right, is that patients had a significant improvement in symptoms, a 50% reduction in symptom scores. They had a 49% reduction in depression, and there was evidence of some increased advanced care planning in almost one in five cases that went through a specialty palliative care referral. And I think this is one, at least one evidence that highlights that there is some benefit. What are some examples of including specialty palliative care at the end of life? And this is also something to highlight because it's something that we see. So in a study that was performed in 2012, they looked at integrating specialty palliative care in a surgical intensive care unit at the time that patients were getting admitted to the SICU. And what they did was basically like a retrospective study of all the patients that died after they received this intervention. So the intervention included a specialty palliative care consult, which is one part, and then the second part included a multidisciplinary family discussion with all of the individuals who were caring for the patient. What they found was an objective decrease in length of stay, and a qualitative improvement in family experience. And it seemed like, and the assumption would be that patients seemed to have preferences that were going towards less aggressive care like DNR, and assuming that this was consistent with their preferences, they were electing to withdraw care early. In a second study that was performed, they wanted to look at this idea of actually integrating hospice with liver transplant evaluation. Now, again, I didn't want to focus a lot about hospice in this talk, because palliative care is much more than hospice. But what this was was a feasibility study in which they actually enrolled 157 patients initially into hospice who had a MELD score of 21 or greater, and what they found was that a lot of patients ended up dropping out because they'd become sick or weren't candidates, and they were continued in hospice. But six of the patients in this study actually ended up receiving a liver transplant. So it just goes to show that in some sort of models of care, you can actually integrate hospice with liver transplant, although it's something that it's probably worth speaking to your local hospice agency in terms of criteria, because this isn't a model that's done everywhere else. It's just an example of a feasible model. So now going from, you know, the value equation, looking at quality, now focusing on healthcare utilization and costs, what is the evidence of palliative care and reducing costs? And Dr. Vogt touched a little bit about on this, but there is some evidence from retrospective data that there is a lower rate of life-sustaining treatments that are provided to patients with end-stage liver disease during the last year of life and during terminal hospitalizations when they receive specialty palliative care consultation. A surprising new development kind of over the last year has been the number of studies that have been focused on readmissions for patients with end-stage liver disease. In all of the studies, two of them being retrospective analyses of large datasets, like the National Inpatient Sample and the National Readmissions Dataset, they found a greater than 50% reduction in readmissions in 30 days for patients who received a specialty palliative care consultation. And then the third study, which was actually a randomized controlled trial study that had to be discontinued due to poor enrollment, they found lower readmission rates in the patients that were actually receiving palliative care consultation. And although these authors sort of draw conclusions about why that might be the case, I think more work is needed in terms of clarifying that. But one thing that could potentially explain this, which we sort of see more anecdotally, is the fact that there is a lot more care coordination that happens when you include palliative care teams in the care of patients with liver disease, and that could explain some of this benefit potentially. And then there was a study that was done by my group showing lower costs at the end of life during terminal hospitalizations when patients include specialty palliative care. So I wanted to spend the last few minutes just thinking about our own practices, knowing that potentially I convinced you that there is some value in palliative care being included in our patients, and how can we really integrate that into practice, how can we integrate that in our specialty referrals? So addressing the two dimensions of care, physical symptoms and psychological aspects of care, in terms of providing primary palliative care, we're recognizing that we're probably not detecting or probably under-treating pain and a lot of symptoms that patients are experiencing outside of complications of portal hypertension, so it would be better just to be more mindful in all of our practices of assessing pain, or getting someone in your practice, being more mindful of assessing pain, assessing muscle cramps, insomnia, daytime sleepiness, fatigue, pruritus, and mental health issues. And when should you involve specialty palliative care? And there are no exact guidelines on this, but in the way that it's been couched in other guidelines, specifically for complex or intractable pain management, like if a patient's on opioids or if they have addiction issues and you're worried about creating a risk contract with patients about their opioid use, that might be one way of involving palliative care. This is something I find in my practice, probably something, I treat veterans, and this is pretty common that a lot of the discussions that we're having about symptom management often come at a consequence of patients' encephalopathy. And so really, honestly, having a discussion with patients about opioids is like having a discussion about goals of care, because really, if a patient's on a transplant candidate and you're talking about putting them on oxycodone for their lower back pain, that can potentially cause encephalopathy and poor outcomes. You're really talking about trade-offs, and that is sort of in the context of a goals of care discussion. And that should be something that, if you're not comfortable doing, potentially something that a specialty palliative care person can help you with in terms of that communication. So speaking of kind of communication, advanced care planning, and some of these social-cultural issues in end-of-life care, I wanted to spend a few minutes just talking about things that we could do in our practice, and I just want to also be mindful of individuals in the audience that have less resource-intensive settings, but some things you could do in your practice is really looking at communication skills resources if you want to improve your skills in advanced care planning. I regularly visit Vital Talk and CAPC, which is the Center to Advance Palliative Care. These are, they have resources that are available for no cost, or they have full resources available for communication skills training on advanced care planning and goals of care discussions that involve CME credits or actual in-person communication skills building. There are actually CPT codes for advanced care planning that were released in 2015 by CMS. So if you actually just, it's very bare bones, if you just have a discussion about an advanced directive with a patient and you spend at least 16 minutes, you can actually bill for advanced care planning if you spend more than 30 minutes. After the first 15 minutes, you can bill another time for advanced care planning. They have very low requirements to actually build these codes, and as part of a quality improvement project that I was part of last year, we actually just made a note and a template that satisfied all those requirements and had fellows integrate advanced directive completion in their practice, and we got advanced directives up from 9% to 31%, just in a matter of five months. So this is something that you can achieve, and it's something that can potentially provide value in your practice. Potentially you can provide reimbursements to your practice as well. There is some preliminary guidance from one paper on, if you were going to do advanced care planning, when are the times to consider it? So prior to developing encephalopathy, following a critical illness, like a stay in the ICU, potentially prior to or after consideration of liver transplant, just to clarify if their goals are there. And it's important for us to recognize that it's not just the patients, it's the caregivers as well, who are having a lot of issues with anxiety and mental health issues and physical symptoms, and then also investing in some sort of skills as to give support at the end of life and understand what the hospice criteria are currently in your institutions or the patterns of hospice referrals are for your patients. Certainly specialty palliative care providers could assist with advanced care planning. That's their communication skills experts. They can provide caregiver support, spiritual distress support, bereavement support, and they can assist with referrals to hospice, but they're not necessarily there to execute that. So if that's something you could feel comfortable with, you could do that, but of course they can help with the hospice referral. I just wanted to highlight that so much research is needed in this area. There are very few people interested in this, and pretty much all of the people who've done this are people who can fit in one room. I did want to highlight some efforts that we are doing of really expanding research in palliative care and liver disease. This is a small group that we created called the PEARL group, which is the Palliative Care Education, Advocacy, and Research in Liver Disease. We actually met at ASLD last year, and over the last 12 months meet monthly to discuss really maybe vent about a lot of issues, but discuss research projects, discuss education issues, discuss advocacy, and we're really hoping to build a large presence at ASLD over the coming years. So I just wanted to leave you with a few takeaway messages that are key. The goal of palliative care is to maximize and preserve quality of life, and I want you to take away that palliative care and end-of-life are just not the same thing. Palliative care is associated with a lot of positive patient and caregiver outcomes and reduced costs, so that makes the case that they are associated with value in chronic illness, including end-stage liver disease. But we do have gaps in our research, and those gaps are closing, and we have to help really support the research in order to develop these models of care. I think you should consider investing in palliative care skills. Obviously, that depends on the settings you're in. There are some studies showing that palliative care is associated with lower burnout, so I think there are some ways that we can sort of integrate these goals of care discussions in our practice and potentially provide values for ourselves. And you should consider really developing relationships with specialty palliative care teams, because they have a skill resource that we haven't tapped in with in our community of hepatologists, and I think they could provide a lot of value. And I think in the future, when there is more evidence for palliative care and liver disease, they can really be part of the way that we implement this for our patients. Thank you so much. You got a shout out. I think I heard a hoot in the background. Oh, we can take one question. Go ahead. Arpin, thanks. I just want, number one, want to put in a plug, so everyone knows about the PAL Liver Study, which is funded by PCORI, it's the largest grant that PCORI has ever given, and it's for different models of palliative care and liver disease, so that's very exciting for our field. Second is that, as part of that work, I've heard over and over and over and over from patients and physicians that just the term palliative care is so scary when you first bring it up with a patient, and so just wondering if you have any ways that you introduce that, what are your tricks that you use? So this actual concept comes up a lot. So the idea that palliative care is a scary, palliative care is scary words, you should use supportive care instead. There's a lot of feelings about this, so I'm not going to dwell on all the things, but I think the long and short of it is that when I did my interviews with patients, 40 patients about palliative care, a lot of them didn't even know what the term is. So there is this association that they have with palliative care and hospice, but a lot of them don't even know what it is. So I think it does start with us at least giving them the message of what it is. A lot of oncology clinics have changed their names from palliative care to supportive care. That could be one way of changing the messaging, but it's really hard to change an entire field and call them a different name. I think that's just a really hard thing to execute, so I think we just have to invest in understanding for ourselves what it is and portraying that message to patients.

Dr. Patel

hepatologist

palliative care

high-value care

liver disease patients

quality of life