and when to use it. It's presented by AASOD's Public Health Healthcare Delivery Special Interest Group. Today's webinar presenters are Drs. Lisi Hansen, Arpan Patel, and Christopher Woodrell. Dr. Meena Rakofsky will serve as the moderator. Today's webinar will be available on demand on AASOD's online learning platform, Liver Learning. Be sure to connect with us on Instagram, LinkedIn, Facebook, and Twitter. Also, tune into our YouTube channel to view our videos. If you are not an AASOD member, today's a great time to join. As a member, you can join as many special interest groups as you would like. Listed are a few other member benefits. The Hepatology Communications Journal features open access research in hepatology. All articles are freely available to read, download, and share. AASOD has many upcoming meetings covering a variety of topics. Visit aasod.org slash calendar for a full list of our events. The Liver Meeting 2019 is November 8th through 12th in Boston, Massachusetts. Registration and housing is now open for all AASOD members and general attendees. You can help support the future leaders in hepatology by giving a donation to the AASOD Foundation. Your donation at any amount is tax deductible. Visit aasodfoundation.org slash donate to learn about ways to give back. Please feel free to submit questions in the Q&A box at the top or bottom of your screen. All questions will be answered at the end of the presentation. Now I'll turn it over to the moderator, Dr. Borkoski. Thank you to the AASOD Public Health and Healthcare Delivery SIG for inviting us to speak today. And thanks to all of you in the audience for taking time from your busy schedules to learn more about palliative care for patients with liver disease. My name is Meena Borkoski. I'm a transplant hepatologist at Loma Linda University Health in California. I have a special clinical and research interest in palliative care and part of the PCORI-funded PAL Liver Study. These are our disclosures. And here are our objectives for our webinar. First, we're going to define what palliative care is and how it is distinctly different than hospice. We'll also introduce key elements of palliative care evaluation and management, emphasizing what we, as hepatology providers, can do ourselves in our clinic with our patients, and then also when to reach out for assistance from our specialty-level palliative care providers. We will accomplish this via two cases. The first case will be a patient with decompensated cirrhosis who is, unfortunately, not a transplant candidate, and the second case will be a patient with progressive HCC who's not responding to local regional therapy. Our first speaker will be Dr. Lissy Hansen. Dr. Hansen is a professor of nursing at Oregon Health and Science University and is a well-published funded researcher who studies palliative care for patients with liver diseases and their informal caregivers. She will provide a brief introduction to what palliative care is and how it can complement the care we provide to our patients with cirrhosis and HCC. Here is the World Health Organization's definition of palliative care that is included because it really shows it is a global phenomenon, and the definition says, in this approach to improve the quality of life of patients and their families who are facing problems associated with life-threatening illness. We have elected to use the National Consensus Project for the quality palliative care definition because it is much more detailed, and it really defines palliative care as beneficial at any stage of a serious illness. Palliative care is an interdisciplinary care delivery system, and it is focusing on anticipate, prevent, manage physical, psychological, social, and spiritual suffering, really with the goal to optimize quality of life for patients and their families. This consensus project has six domains of palliative care listed and focuses on physical symptoms, psychological aspects of care, advanced care planning, which Dr. Patel will address in a little bit, and also social and cultural issues, spiritual, religion, and other issues, and at last, end-of-life. As you can see, these domains really encompasses the trajectory of the illness from early on thinking about palliative care to end-of-life care. Most often, we focus very much on the physical aspects of palliative care and quality of life, and that is not just as important sometimes as the physical or the psychological aspects, which include depression, distress, fear, and other symptoms. Included is also the social and cultural aspects that goes towards the caregivers, often the changing roles as the disease progresses and their relationships, also to really think about the financial burden. The spiritual includes hope and suffering, and what is really important with this slide is to show that they all are interrelated, that the physical domain may actually influence the spiritual and vice versa. So what is palliative care? We have the old version here, first with the curative intent, and then the palliative intent after the curative intent, hospice and bereavement, and you can see the curative really is the aim of treatment of liver disease early on from diagnosis, and then the palliative is the later intent closer to death. The new version looks like this, and look careful at the red dotted line. That is the trajectory of liver disease from diagnosis to death, and as you can see, there's a great emphasis on treatment in the beginning, and it gets less as the disease progresses, and the palliative care principles become more important. Those little ups and downs on the red dotted line is really complications that happens throughout the trajectory of the disease. So palliative care versus hospice, there's really two distinct and very different care models. Palliative care really focusing on receiving medical treatment at the same time as palliative care is provided, so it is provided concurrently or can be. It is really a system that looks at supportive interventions and consultations, and really that they are very appropriate and the most appropriate for the patient. Palliative care also looks at coordination of care, collaboration with the referring physician. It also often addresses goals of care or care preferences. Palliative care can help in navigating the healthcare system, which can be very daunting for patients and families, and also facilitate transition to alternative care settings like hospice. On the other hand, hospice life expectancy of six months or less is what is really affiliated with hospice. They prepare patients and their families for the patient's death. Often they help with practical things. It is interdisciplinary, can be delivered at home most usually or in nursing homes, and even though, as I mentioned, it is interdisciplinary, it is primarily nurse-led, and it is the nurse that really does the symptom assessment and management. So who benefits and what are the benefits from palliative care? It really is research has found primarily in patients with cancer that they have better symptom control, better quality of life, lower depression, longer survival, and also improved satisfaction with care, and there may be less healthcare utilization towards the end of life, as well as lower cost. So who provides palliative care? We have two models listed here, the specialist model and the generalist model. The specialist model is the interdisciplinary team. It is combined of physicians and advanced practice nurses, and they have received specialized training in palliative care. Included in the team may also be social workers, chaplains, pharmacists, dieticians. They can do care in any setting, as well as really emphasizing on continuity of care. The generalist model is the clinicians trained in basic principles of palliative care, and that can be any physician or doctor within their specialty, like hepatologist or gastroenterologist. They can work alone or in conjunction with the interdisciplinary team. They are critically needed alongside the specialist model to make the best palliative care for the patients and their families. This may be the only model in your setting or institution. So going back to the slide we just looked at, here is again the trajectory of liver disease from the time of diagnosis to death, and it entails both patients and families. So when would it be the best time to introduce or refer to palliative care? Should it be at the time of diagnosis, at any stage of the fibrosis, or when the MELT score increases? Or should it be when the first referral for paracentesis is completed or done? Thank you, Dr. Hansen, for providing an excellent introduction to what palliative care is. Next, we would like to focus on how to integrate these elements of palliative care into clinical management of our patients with liver disease through two cases. We have two speakers that will focus on management principles from the perspective of both a transplant hepatologist as well as a specialty palliative care physician. Our first speaker will be Dr. Arpan Patel. Dr. Patel is a transplant hepatologist and a health services researcher at UCLA and the West LA VA. He's currently pursuing a PhD in health policy and management at UCLA with a research focus on improving integration of palliative care into management of patients with liver disease. Our first case is Mr. Smith. He's a 74-year-old gentleman with decompensated cirrhosis secondary to hep C. He's here in your GI hepatology clinic for a routine follow-up visit. He has encephalopathy and ascites, but that's well controlled on his medications. He has a remote history of variceal bleed two years ago. His main complaints today are really chronic abdominal pain. His male is 18. His child class is B. Unfortunately, he's not a liver transplant candidate due to his advanced age. He also has suboptimal caregiver support. So, Dr. Patel is going to share a little bit about our management of this patient from a hepatology perspective. Thank you, Dr. Rokoski, for that introduction. So, from a hepatologist perspective, I think the first thing we often think about is how we can assess this patient. And, you know, from the information provided, the patient's obviously decompensated, but stable. And so, the principles of management will include treating the patient's hepatitis C to see if we can regress the fibrosis, as well as managing the many decompensations with diuretics and other medications. Of course, a lot of time during the encounter will probably come from talking to the patient about vaccinations, minimizing sarcopenia, and optimizing nutrition. And so, as a hepatologist and being trained as a hepatologist, I feel like I'm very well equipped for managing these situations clinically. But one situation we may be less comfortable with is handling the question about how this patient and his wife should prepare for the future. It may be something that they come up with during the clinical encounter or it might be something on your mind. And so, in this segment of the talk, we'll be discussing strategies on how to handle this topic. The topic of knowing about the future is important because we know from the literature that whether or not we bring it up in practice, this is on patients' minds. In patients with cirrhosis, they want to know more information about losing the ability to do certain tasks and their function. They convey some uncertainty about the future, and they do care about how they're going to handle the concept of death, if that's something that may be in their future. Caregivers also want to know the same sort of information. They want to know about treatment options before they happen, and they want to know what to expect out of patients' illness trajectory. So, while patients and caregivers want to know more about the future, unfortunately, they're not very well prepared for it. Very few patients have advanced directives uploaded in their medical records, and goals of care discussions are happening quite late. From these qualitative studies, we've shown this information, as well as the fact that patients themselves are reporting a lack of preparedness at these steps. How do we fix this problem? One solution that, as clinicians, we can use to help patients and their caregivers plan for the future and provide goal-concordant care through their illness trajectory is performing advanced care planning, and this is just one framework that can be used to discuss advanced care planning from the Hastings Center guidelines, and we'll be going through it step-by-step. The first part of advanced care planning to highlight is sharing prognosis, which is very challenging. This often can be because we're not exactly sure what type of information patients want to hear. A framework that's been used for sharing prognosis comes from Dr. Gretchen Schwartzbe at the University of Wisconsin. It's called the best case, worst case, and most likely situation. A lot of times in clinical practice, we often talk about the best case, like, we're going to get you to transplant, or you're going to make it through this infection. This tool allows us to convey both good information and then information that's associated with less favorable outcomes. So, here's how we can apply this framework to discussing prognosis for Mr. Smith. So, we can say, we hope for the best, which is that treating your hepatitis C helps you regain some liver function and maintain your current health. We should also be prepared for the worst case, which is that your liver function doesn't improve and even shortens your life. I think the most likely situation is that the treatment will help a little bit, but not enough to keep you out of the hospital. So, by talking through all of these different situations, we're giving the patient, their caregiver, some expectations of all the different things that can happen. The next step is clarifying health goals and values. This is a pretty important step of advanced care planning and something that I think we tend to ignore until it's a little bit too late. And what it really entails is allowing patients to define for us what a good quality of life means for them. The part of the discussion that I think helps us, the reason why this is helpful in our discussion is that many times, we're not really sure what's important for patients. And allowing us to elicit these qualities will help us then make the types of decisions we want to make for them. Here are some tips on how to have this discussion. So, one way of bringing up health goals is asking a question like, given the information we discussed, can you tell me what's important to you in order to live best with your condition? What does a good day look like? What has life been like for you with all that is going on? Patients might say things that surprise you that have nothing to do with their medical condition, like, it's really important that I make my daughter's wedding or it's really important that I still maintain the ability to walk. And knowing these health goals will help us then move on to the next step. The next step is establishing care preferences. A lot of times we often jump to this part of the discussion. You can imagine with colleagues either in the hospital or when patients are very sick mentioning the DNR discussion or needing to make a patient DNR. But kind of in reference to discussing health goals, we want to emphasize that establishing care preferences is not the goal of advanced care planning, but it's reasonable to bring up when some treatment decisions are expected. For someone like Mr. Smith who hasn't been hospitalized but, you know, it still has decompensations, one thing you might want to bring up is have you ever thought about what it would be like to be hospitalized? And then eliciting some of the patient's preferences. Have you talked to anyone about what sort of care you would want if you were unable to speak for yourself? The most important aspect of this discussion should be that the values and health goals that you elicited from the previous steps are aligning with the patient's preferences. So, I put an asterisk next to this step, which is establishing a surrogate decision maker, because experts in advanced care planning often note that this is, if anything, the one thing you should do when you have an encounter with a patient. And so, if you remember only one thing from this set of slides, it's really that you should be focusing on identifying a surrogate decision maker. When a surrogate decision maker is documented, the label often turns into a healthcare or durable power of attorney or a healthcare proxy just to kind of discuss those specific terms. And it's important to note that many times the person in the room next to the patient isn't the surrogate decision maker. It could be a friend. It could be someone in another state. And specifically for our patients with hepatic encephalopathy, before they lose capacity, it's important to really define that person. So, a question you might ask to elicit a surrogate decision maker is, who do you want to make decisions about your health if you can't make them for yourself? The last and an important part of advanced care planning is documenting these discussions and these preferences. And there are specific state laws that guide how we do this individually, but the types of forms that are available are a healthcare proxy form or a durable power of attorney or healthcare power of attorney form, which allows you to document that surrogate decision maker, a living will, which allows you to document some of the values, health goals, and healthcare preferences, and then physician or medical orders, which is implemented in some states as a MOLST, POLST, or DNR form. Just a few tips about these ways of documenting is that most in the advanced directives, you only need two unrelated witnesses and don't need a lawyer or a notary, though the physician and medical orders often require a physician or advanced practice practitioner to fill out. Practically speaking, it's important for all parties to have a copy of these forms. And one thing I did want to emphasize is that since 2015, there are actually billable codes that can help physicians and providers get reimbursed for advanced care planning. And so, this is kind of my last slide of advanced care planning. I just wanted to emphasize that a lot of this information may feel challenging and new, but I'll argue it's something that we all actually probably do in clinical practice. We just don't put a name to it. And I hope this framework will help you better conceptualize what advanced care planning is and how it could apply to your practice. Thank you, Dr. Patel, for summarizing important aspects of advanced care planning and how we can integrate some of these principles into our own clinical practice. Our next speaker to address palliative care management of case number one, Mr. Smith, will be Dr. Christopher Woodrell. Dr. Woodrell is a board-certified palliative care and health services researcher at Mount Sinai and the Bronx VA. His research focuses on developing and testing early palliative care interventions for patients with HCC and their family caregivers. So, this first slide is a complex slide to represent a complex health system. You know, I think there's no exact time that is perfect to refer someone to palliative care who has end-stage liver disease. It's going to differ based on available resources, patient preference, and a number of other factors. This slide shows all the different ways that these patients might be helped, depending on what their needs are. Starting from the top, obviously, chronic liver disease management, transitional care programs, maybe after a hospitalization, home-based healthcare services, primary care, geriatrics, psychiatry, particularly in the context of addiction, community palliative care, which is becoming increasingly available, consultative palliative care, which is the focus of today's talk, and chronic pain management with anesthesia or chronic pain. In terms of Mr. Smith, the case that we're discussing, I'm just going to talk a little bit about referring back to the domains that Dr. Hansen mentioned in the beginning of the talk and talk briefly about how we, as specialist palliative care clinicians, sort of operationalize some of those in a visit. So this is a figure from Jennifer Temel and colleagues from their trial of early palliative care for people with lung cancer and gastrointestinal cancers that was published a few years ago that I think is one of the more sophisticated representations of what we in palliative care talk about in terms of what's in the palliative care syringe and is an ongoing research priority for our field is understanding exactly what we do impacts the outcomes that patients experience. And I'm often asked by colleagues, what do you actually do in these visits? And I think this representation is a really nice tool to illustrate that. Going from top to bottom, you have, you know, rapport is something that clearly is something that is important in early visits. This, by the way, was an ambulatory palliative care study and the sequence of visits goes here from left to right. So as you can see, rapport is really important in a very frequently addressed in visits early on and over time decreases as you might expect. Symptoms, coping strategies, and illness understanding going down are all pretty constant across the trajectory or across the course of the study that's represented. Advanced care planning, treatment decisions, and disposition. I want to draw your attention specifically to these three because I think that it's really important to note that they're relatively infrequently addressed in these early visits and then later as you move to the right over here, they become more important. So advanced care planning, for instance, isn't something that is necessarily addressed until much later. These are data from Dr. Hansen, actually, and looking at symptom prevalence in people with end-stage liver disease close to the end of their life. And what I want to draw your attention to is a couple of things. Number one is just the number of symptoms that are experienced. Number two is the frequency that the symptoms were reported in the study. And I think, in general, hepatologists do symptom management all the time, and I bring this up to mention that, number one, we in palliative care do symptom assessments and to collaborate with the goal of collaborating with the hepatologist. I think I also want to point out in the upper-left corner of the table that, I mean, pain was incredibly prevalent in the population that Dr. Hansen studied with over 90% of interviews. In the next slide, I want to just give you an idea, as I mentioned before, of how we bring some of these domains into these palliative care visits. You know, the question of what gives you strength can be a really effective tool to invite people to discuss with you how it is that they're getting through their illness, how they're coping, asking about, you know, it can allow them an invitation to speak about religion, their practices, or their spirituality. We can also bring in concerns they might have about what life is like living with their illness at home. If there's a caregiver, we can ask the patient to identify that person, and if they're present in the visit, we can ask how things are going for them to identify a caregiver burden and find other ways to help. And then, finally, just to reiterate, all of these assessments are, in an ideal setting, interdisciplinary with involvement of a core group of physicians, nursing, social work, and chaplaincy, and where available, you might see palliative care groups that have, can offer child life or art therapy, psychologists, massage therapy, mindfulness-based therapies. Obviously, these offerings will be heterogeneous across programs based on what they have available. So, we'd like to summarize case one with a couple take-home points. Remember, this is Mr. Smith, decompensated, cirrhotic, not a transplant candidate. So, when we see him in our clinic, we're going to be discussing our typical hepatology management, discussing hep C, adjusting his medications for his decompensation, but, you know, there could also be an opportunity to sprinkle in some palliative care management aspects. In particular, I think our speakers have given us some very helpful information for advanced care planning, including some potential helpful conversation starters to facilitate these discussions. And as we begin talking about symptoms and management, we may need a little extra help. And of course, we can consider referral to a palliative care specialist for more comprehensive assessments, as well as additional support and management of very complex symptomatology. So, we're going to move on to case number two. Case number two is Mrs. Kim. She is a 58-year-old female with compensated child acerosis, but she also has HCC. She has excellent functional status with an ECOG of zero. Her initial tumor burden was 4.5 centimeters, making her within Milan criteria. AFP was 250, and she has no evidence of any metastases. She underwent a TACE two months ago. You order an MRI to assess her response to this TACE. The MRI shows a decrease in the size of the treated HCC lesion, but unfortunately, she has developed interval new HCCs. There's three of them, and she's now outside Milan. Her AFP is elevated at 1,200. So, she's coming here to your clinic to review the results of her MRI. Dr. Patel is going to begin discussing management of our patient, Mrs. Kim. Thank you, Dr. Rakoski. So, I think this clinical case is interesting because it reflects something we've probably seen more often than we remember, which is the situation where we're breaking bad news. The first way that we reflect on this is first just us generally understanding what is the patient's prognosis and treatment options that we would offer. So, based on staging, this patient would be BCLC Stage B, and things to consider for someone like her does not include liver transplant, but may include local regional therapy options, potentially some novel chemotherapeutic options, including serafinib and nivolumab and other therapies. And we might consider getting a tumor board involved if they're available. But I think one other aspect that we have to reflect on is the fact that sometimes we just glaze over these results and start to engage patients about treatment options. And I think that's kind of consistent with sort of the due culture that we have as hepatologists to kind of focus on the next option. But I argue that while patients do care about the information that we're giving them, they also care...we know from studies in patients with advanced cancer that the context in which you deliver this news, as well as the type of emotional support you provide, has a big impact on how the patients actually experience that discussion and take away points from that discussion. And so, myself and Dr. Woodrow will be going through a framework on breaking bad news. Thank you. So, there's a number of useful communication frameworks out there that you may come across. We've chosen to focus on two today for their utility, both in practice and in teaching learners. And really, we include them here for two reasons. To, one, give you a sense of how we approach communication from a palliative care perspective. And number two, give you potential tools for your own toolbox and take some of these principles into your own practice. So, the first one I'm going to talk about is the SPICES mnemonic, which has been around for about 20 years and it's really focused on breaking bad news. And some of these principles can be extrapolated to any conference where news or updates are being delivered. So, the S stands for setting of the meeting. And in an ambulatory practice, this is going to be pretty straightforward. It's obviously, you know where and when it is. But inpatient, it can be more challenging. Are you going to have it at the bedside? Is the patient going to participate? Do you have available a conference room? Are there enough chairs? Even something as simple as that. You want to know if there's going to be interruptions or is someone in the room on call such that their pager is going to be going off a lot. You want to think about who is going to be present. Hopefully, you maybe have the opportunity beforehand to know from the patient, especially if you have a relationship with them, who they usually like to have with them. And if they don't show up that day, sort of inquire. Someone can always get on the telephone. You want to think about if an interpreter is needed. In person is always better, best. Some places have video or iPads available. And then there's always the telephone. Definitely want to avoid having family members interpret, especially when you're breaking bad news. And then are there other specialists whose opinions are needed? A social worker or a surgeon or is palliative care presence helpful? And then finally, just the data. Do you have the right data, the most up-to-date data? The next step is key for perception. This is, I think, really important to identify holes or gaps so that you can customize how the information is delivered to the person. It's obviously going to be a different question that you ask depending on how well you know the person. If it's your first time ever encountering them, you might have them start from the beginning. If you have seen them a month ago, it's a much more, you're more up-to-date and this will be a shorter discussion. Ways that you might phrase it are what have your other doctors told you so far about your cancer? Or can you share what you've been told since we last spoke? I stands for invitation. I think this is often overlooked and maybe people think it isn't necessarily something to include. But I think it's important because it really assesses the individual's readiness to hear information and also sort of gives them a little bit of control. One way you might do so is to say, quote, thank you for sharing your understanding. That's very helpful. I do have some updates on your condition. Would it be all right if I shared those with you now? I'll be discussing transmitting knowledge and medical information. The K is for knowledge. This is really the part where in many times the hepatologist is actually delivering the news. So questions to consider are what's going to be your main headline when you deliver the news? And the second point is thinking about a warning before you deliver the news. One example would be, unfortunately, I do not have good news. It's really important that when you craft that phrase, you're going to use very simple language, avoiding medical jargon, and then stopping. So one example is saying for this patient, Ms. Kim, your scan shows that the cancer has progressed to an advanced stage and then using your silence. So we're going to introduce one other mnemonic and again, this isn't a formal communication course. This is to give you an idea of how we approach communication and to give you some tools. And this NURSE framework is something that we teach routinely to our team and is adapted from the work of Bass, Arnold, and Tolsky, whose those are references at the end and then also resources for communication training. So the NURSE mnemonic starts with N or name the emotion where you would acknowledge that what it is, you would name it. I see how angry this makes you, I see how upset you are. The U stands for understanding, an understanding statement where you sort of allow for that emotion by saying something like this is a completely understandable reaction to all of this. R is for respect statement to show your sort of respect for their situation. You've shown such commitment to your treatment coming up so far all this time for your care. S stands for support. I find these particularly helpful support statements where you sort of simply remind the person that the entire team is here to support them or no matter what happens we're going to make sure that we have a plan for you to get your care. And then E stands for exploring and this is sort of where you open up for the rest of the discussion. Could you share more about what you mean when you say or you explore what exactly that emotion is because that will eventually let you gain more insight into what the person is really worried about so that you can align treatment recommendations. A few other pointers would be to use what we call an I wish statement which you never want to follow with the word but. I wish I had better news for you. I wish we had more treatment options for this situation. And I want to emphasize again that silence is something that should be allowed. It sort of lets the patient pace the conversation. We're talking seconds, moments, not 10 minutes but if the person does need to stop you might ask something like would it be okay if we talk about next steps and that's sort of moving back into the medical side of things. If the answer is not yes then you want to avoid doing that because the person hasn't exhibited readiness to do so. So to cap off the psych framework we have S for summarize and strategize. Just wanted to emphasize that a lot of times we jump to this step before kind of going through the other aspects of breaking bad news. In this case as Dr. Woodrow was saying if they are ready and willing to engage the cognitive space and have left kind of some of that emotional space we can start to discuss treatments for them. So in our case depending on your purview of medical knowledge and treatment options you would offer local regional therapy, potential medical therapy. And then it's important really even at this step to really avoid giving a lot of information at once and to use reflective statements that really help you understand whether the patient or caregivers understand. So one thing you can say is to make sure I've done a good job can you tell me what you'll tell your family. And this just allows there to be more of a discussion about the next steps instead of laying all the information onto the patient or caregivers at once. So while there's no formal programs or studies that have addressed palliative care or supportive oncology for people with HCC I do just want to bring to the audience's attention that in the medical oncology world that ASCO has actually recommended that palliative care be routinely incorporated into the care of anyone with an advanced cancer. And so with Mrs. Kim, you know, a palliative care referral would involve optimizing her quality of life while she receives her ongoing treatment such as local regional therapy including regular symptom assessments and treatment and psychosocial assessment involvement of an interdisciplinary team. The second point we want to make is that HCC is a uniquely complex and predictable illness in terms of its course and helping her and her caregivers with that sort of uncertainty is something that palliative care can help with. And then finally helping with illness understanding. And that's certainly not, you know, something that palliative care would replace the role of the different specialists taking care of an HCC patient but rather helping the person frame the questions for their doctors and sort of having an iterative discussion over time to help people understand what's going on. One question that might come up or be on your mind would be as to when Mrs. Kim would be a candidate for hospice. And the answer to that would be that, well, first hospice is for anyone with a prognosis of six months or less but they also can no longer be receiving disease-directed therapy. So in her case, that would mean that she has profound liver decompensation such that she progresses to Barcelona Stage D or her functional status worsens to ECOG of more than two, again, making her Barcelona Stage D or if she were to develop critical illness and be in the ICU, for instance. And current evidence shows that frequently HCC patients do actually receive hospice at the end of their life in a study of Medicare beneficiaries by Stanoff and colleagues. Though these referrals come late and the median length of stay before death is 18 days, so less than three weeks. And they also found this group that people who, HCC patients who receive hospice at the end of life have lower rates of healthcare use. So to summarize a few points regarding our patient, Mrs. Kim, who has progressive HCC. So when you see her in clinic to discuss her new MRI results, you will of course provide some hepatology management for her progressive HCC. For instance, you may discuss options for HCC treatment including local regional therapy and immune therapy. You may even want to discuss, you know, downstaging for the purpose of consideration for transplant in the future. However, there are some important aspects of palliative care management that we may want to utilize in order to help break the bad news about her progressive HCC. For instance, we could utilize the spikes framework that Dr. Patel and Dr. Woodrell discussed and also utilize the nurse framework to help address and support their emotional response to this bad news. And you know, of course, it always is important to assess their symptoms, psychosocial, spiritual and caregiver needs as we help them and support them through their cancer diagnosis, progression and treatment. So this is our final slide and we'd like to close with a couple of take home points. First, palliative care is a multidisciplinary approach to care that focuses on patient and caregiver quality of life. We would like to emphasize that it is not the same as hospice and palliative care can be provided concurrently at the same time as life prolonging or curative treatments such as HCC treatment or even liver transplantation. Providing basic elements of palliative care is challenging and it is a skill set that can be learned and can be delivered by the hepatology team so we can start utilizing and practicing some of these aspects of palliative care that we discussed today with all of our patients. And specialty palliative care teams can be a consultation that can help complement the care we provide in our hepatology clinics. So now we're going to transition to our question portions. We did provide our contact information. These are all of our email addresses if you have any questions that you'd like to discuss kind of offline with us. We've also provided a couple of websites for resources and then at the end of our slides because I think all of these slides are available, there's a whole list of references. I'll click through them quickly if you would like to refer back to some of the studies that we quoted. Okay. So I'm going to start with a question perhaps for Dr. Patel. So I think this is a pretty typical comment that I hear from gastroenterology and hepatology colleagues, which is, you know, my clinic is so busy. I have 15 minutes in my return visit to cover all the medication management, you know, HCC and variceal screening and other preventive measures for just their decongestant and I could not possibly have enough time in my return visit to also add in some discussions about advanced care planning and other, you know, time-consuming discussions. So how could I possibly start integrating palliative care into my routine hepatology encounter? So maybe, Dr. Patel, you could share with us a couple of management strategies. Sure. So I agree, Dr. Rakowski, that's something I hear all the bit of time when I discuss integrating advanced care planning, particularly with my colleagues. I think that the first few things is that, you know, I wouldn't feel overwhelmed by needing to do every single thing during every visit. You know, as we were mentioning, advanced care planning is a process. And so just incorporating some of those strategies of communicating with patients is important. And also note that like a lot of these skills can become faster as you start to practice it. One thing to note, which I just wanted to emphasize again, is the fact that there are now billable CPT codes that we can use for advanced care planning. So if you wanted to, you know, restructure some of your visits to allow more time for advanced care planning and a follow-up visit, you know, because we do often see some of these patients quite regularly. For decompensated patients, I see them at least every three months. So during one of those visits, if you're not putting out fires, one thing you can think about is giving yourself some time to really have these conversations and really practice them. So while we don't feel like we need to, you know, cram everything in one visit, we can space it out in multiple visits. Thank you, Dr. Patel. That's really helpful. I have a question that I'd like to address to Dr. Woodrow. I see a lot of patients and they often complain of severe chronic abdominal pain. And I try to explain to them, you know, you can safely use some Tylenol, make sure you avoid NSAIDs like Advil, but they say, you know, that's just not going to touch the kind of pain that I have. I can't sleep. I can't function. So how are some ways that you manage patients with chronic pain? And in particular, maybe you could talk a little bit about opioid use in patients with a history of substance abuse. Many of our patients obviously have a history of alcohol or injectable drug use that contributed to how they acquired liver disease. Absolutely. So the first thing I'll say is that the key here is harm reduction is the sort of approach I would take. And we know that our toolbox for severe pain is somewhat limited, particularly for someone with liver dysfunction and or kidney dysfunction. And sometimes opioids are going to be sort of all we have available at some point. One point I will make is that, or sort of caveat, is that some of you may... And this is something that we often struggle with in palliative care is the question of who manages chronic nonmalignant pain. And we often involve our colleagues in chronic pain management, anesthesia pain for that. So in our own institution, it's really on a case-by-case basis. In terms of somebody with a history of substance use disorder, it really is challenging. And like I said, the best approach is one of harm reduction. And so some of the elements of my approach would be to assess their risk of misuse using a validated tool. Definitely the collaboration and involvement with a family or informal family member or informal caregiver, a multi-specialty and multi-disciplinary approach. You want to have collaboration with, of course, the hepatologist, anesthesia or chronic pain if necessary, either for management of chronic pain or for procedures like a block or a pump, social work, nursing, addiction psychiatry, and primary care. And also the use of... You can use things like opioid agreements, although these aren't really evidence-based. They are more or less standard practice. And then maximizing the use of adjuvant medications is something I would try to do before using an opioid. So it depends on their liver function, obviously, but acetaminophen, less than two grams daily, gabapentin, if they can tolerate it, depending on encephalopathy, or SNRIs, obviously, we would avoid NSAIDs in most of these folks. And then finally, using non-pharmacologic modalities wherever possible, so whether that's mindfulness-based therapies or massage therapy. So, you know, there's things we can do, but it's challenging and resources can be limited and it can be challenging for that reason. Dr. Hansen, I have a question for you. In your portion of the talk, you mentioned several research studies on the benefits of palliative care. A lot of those were in the cancer population. Obviously, we would be interested in knowing what the research may show in terms of the benefits of palliative care specific to patients with liver disease and then, of course, liver cancer. But is there anything out there that might give us some evidence about whether palliative care can be beneficial to our liver disease patients specifically? There are actually very few studies in addition to the one by Dr. Patel. And one of the ones I have looked at a fair amount is the study by Baumann and College. It was published in Journal of Pain and Symptom Management in 2015. And the title of the study was Benefit of Early Palliative Care Intervention in End-Stage Liver Disease. And these were for patients who actually were awaiting liver transplant. And the researchers wanted to improve their symptoms and their mood, and they implemented early palliative care intervention based on, which I thought fascinating, on the National Consensus Project. So they looked at the patient as a whole and they addressed, of course, first formal assessment of patient symptoms and depression, but also any other symptoms that the patient wanted to discuss, as well as psychosocial well-being and spirituality. And they also, if patients wanted to refer to specialty care or if they wanted any other appropriate resources like chaplains, they were referred and got assistance in that. So the patients actually suffered 4.7 symptoms, and half of them, there were 50 patients in the study, and half of them had improvements in symptoms like well-being, appetite, anxiety, fatigue, unless 43% had improvements in depressions. So it really showed that palliative care, early palliative care, can be implemented for patients with end-stage liver disease. One question that's really intriguing to me is these were patients that were awaiting liver transplant, and they may be a little bit easier to follow because they may be more compliant than the people who have been rejected. So I think that's a group that really needs some focus. Thank you, Dr. Hanson. So we're at about 10 o'clock now, so I think that brings us to the end of our webinar. Of course, there was our email addresses, too, if you just wanted to take the opportunity to ask them some questions after the webinar. So thank you very much for your time, and we welcome any questions offline.

palliative care

liver disease

hospice care

evaluation and management

physical symptoms

advanced care planning

end-of-life care

chronic pain

interdisciplinary care