Thank you to the AASLD for allowing us to present this important and interesting webinar. My name is Dr. Vinay Sundaram, and I'm a transplant hepatologist at Cedars-Sinai Medical Center as well as the current chair of the Membership and Mentorship Committee. I'm also an ad hoc member of the Diversity, Equity, and Inclusion Committee. On behalf of the Diversity, Equity, and Inclusion Committee, I'm very pleased to bring to our audience this webinar entitled Promoting Equity, Diversity, and Inclusion in Communication Near the End of Life. We have a variety of experts who will be functioning as speakers and panelists. However, although there will be a didactic component to this webinar, we also want it to be interactive, and therefore we'll leave plenty of time at the end for our audience to ask questions of our expert panel. Now I would like to hand it over to my co-moderator and our current AASLD president, Dr. Raymond Chung, to introduce our speakers and panelists. Thank you so much, Vinay. I'm very pleased to be part of this important session and for AASLD to support this extraordinarily important initiative in health equity. I'd first like to introduce our speakers, Dr. Nneka Ufre and Dr. Christopher Woodrow. Nneka Ufre is a transplant hepatologist in the Liver Center and Department of Medicine at Mass General and Harvard Medical School. Dr. Ufre's research interests center around palliative and supportive care and informed decision-making with the goal of developing interventions aimed at improving the quality of life and quality of care for patients with advanced liver disease and their caregivers. Her work is currently supported by a Clinical Translational Outcomes Research Award from AASLD and the Mass General Hospital Physician Scientist Development Award. Christopher Woodrow is a health services researcher and board-certified internist and palliative care physician at the Icahn School of Medicine in Mount Sinai, New York, where he is currently assistant professor. He is also a staff physician within the Geriatric Research, Education, and Clinical Center at the James Peters VA Medical Center in the Bronx. Dr. Woodrow's career goal is to help improve quality of the experience faced by people with advanced liver disease and liver cancer. Its research focus is in developing and testing yearly palliative care interventions for people with hepatocellular carcinoma and their family caregivers. In addition, I'd like to introduce our two expert panelists, Dr. Arpan Patel and Dr. Julius Wilder. Arpan Patel is a transplant hepatologist and health services researcher at the David Geffen School of Medicine at UCLA. He's also a staff physician at the West LA VA Medical Center and core investigator at the VA Center for the Study of Healthcare Innovation, Implementation, and Policy in LA. Dr. Patel's career goal is to ensure that patients with advanced liver disease receive high-value care that optimizes their quality of life. His research goal is to understand ways that principles of palliative care can be integrated in management of these patients and their caregivers. And Dr. Julius Wilder is an assistant professor of medicine at Duke in Durham and is on faculty at Duke Regional Hospital and the Duke Clinical Research Institute. Dr. Wilder is a principal investigator or co-PI on multiple clinical trials in hepatology and has received several research awards for his work on social determinants of disparities in gastroenterology and hepatology, including the 2018 ASLB Clinical Translational and Outcomes Research Award. This is the agenda for today's session. The presentation will immediately follow, again, by Drs. Ufere and Woodrow. We will follow that presentation with a 15-minute Q&A session moderated by myself and Dr. Sundaram with our panelists, including our speakers, Dr. Patel and Dr. Wilder. So without further ado, we'll launch into our presentation. Dr. Ufere? Thank you, Dr. Chung, and thank you to ASLD for the invitation. These are our disclosures. Next slide. So we wanted to present to the audience two fictional cases that we believe will highlight a number of the themes that we'll be discussing related to culture and end-of-life care in the care of our patients with advanced liver disease. And what we want each of you in the audience to think about is whether you see yourself, your colleagues, or more importantly, your patients and their loved ones reflected in the cases that we present today. We really believe that a lot of the themes raised by these two cases will resonate with many members of the audience. Advanced slide. So let's start with case one. Next slide. Here is where we are. For the past two years, we've cared for a 62-year-old non-English speaking woman with decompensated HCV cirrhosis. She is usually accompanied by her daughter who provides interpretation during these appointments, but today she presents to clinic alone. Advanced slide. She just completed her routine surveillance imaging for hepatocellular carcinoma, which showed new ascites, multiple large liver lesions, new portal vein thrombus, and a newly elevated AFP to 7500. Advanced slide. You share these results with a patient with the assistance of a medical interpreter. At the end of your clinic visit, you receive a call from her daughter who is angry that this new diagnosis was shared with her mother who is now very distressed. Advanced slide. She tells you on the phone, from now on, all information about my mother's medical care should go through me first. Advanced slide. So case two, here is where we are. As the inpatient consult attending, you've been following a 72-year-old man with NASH cirrhosis and multiple medical comorbidities who was transferred to your hospital to manage an esophageal variceal bleed. Advanced slide. This is his fourth hospital admission for complications of his liver disease over the past six months. Advanced slide. After his endoscopy, he has remained intubated in the intensive care unit and is now in progressive septic shock and multi-organ system failure with a MELD sodium score of 37. Advanced slide. The critical care team is planning a family meeting and the family asks for the hepatology team to be present to discuss his eligibility for liver transplantation. Advanced slide. Despite his grim prognosis, during the meeting, it becomes clear that the family wants everything done, including resuscitation if needed. Advanced slide. His wife states he has always recovered each time he has been hospitalized. He will get through this just like the last time he was here. We are not giving up hope for a miracle. Advanced slide. When you share that he is not a transplant candidate, his wife becomes distressed and tearful and expresses that he is being denied care because of their cultural background. Advanced slide. These two cases should show you here is where we are, where there are clear issues and tensions related to communication and community in terms of our approach to end-of-life care discussions that have and include approaches to include cultural humility. In the first case, when I think about things that resonate from that case with me, I think about issues related to communication and specifically thinking about the appropriate use of a medical interpreter versus the use of a family interpreter when taking care of patients who are not English-speaking. I also think from that first case about how we should approach truth-telling and delivering bad news for our patients in a way that is culturally humble. When I think about the second case, I think it raises up a number of issues related to community. So, our patients don't exist in isolation. They have families based on however they define family. And they exist within a community that could be related to their racial and ethnic affinity group, their larger social group, and in the context of end-of-life care, importantly, their spiritual and religious group. Next slide. I think these two cases also highlight a lot of conflict and tension and moral distress, especially when we're thinking about our own personal value system, which may be different from the value system of our patients and their families. So, in the first case, maybe you felt distress when thinking about how you would approach or value patient autonomy when it comes to medical decision-making compared to an individual who may value having their family be the ones who lead medical decision-making for them. And potentially, in the second case, you felt some tension or conflict in seeing the presence of prognostic discordance between a patient and family and the medical team, as well as tensions and emotional distress and moral distress related to medical mistrust, medical distrust, as well as medical racism. Next slide. So, the objectives for our talk are as follows. To review current patterns in end-of-life care for patients with advanced liver disease, to understand the importance of cultural humility in end-of-life care discussions, and to identify specific communication strategies and resources to use in commonly encountered end-of-life care case scenarios that incorporate patient and family identities, experiences, and values into these discussions. Next slide. So, I think it's important for us to take a step back and take a look at the larger picture of what end-of-life care looks like for patients with advanced liver disease here in the United States. Next slide. So, in the United States, advanced liver disease is the sixth leading cause of death or higher for patients age 25 through 64, and unfortunately, we know that there are clear racial and ethnic disparities in death from advanced liver disease, which represents the fourth leading cause of death for American Indian or Alaskan Native individuals, seventh for Hispanic, 11th for white, 13th for black, and 14th for Asian Native Hawaiian and Pacific Islander. Next slide. We also know that there are racial differences in the location of death for patients with advanced liver disease. In this work led by Dr. Allie Kaplan at Cornell, they used CDC WONDER data from 2003 to 2018 to look at trends in the proportion of deaths at home stratified by race, and as you can see here in this figure, patients who are of white background have the highest proportion of deaths at home compared to patients who are black, Asian, and American Indian. Similar findings were found for the proportion of deaths at home in hospice. I think notably in this study, black patients were found to have significantly decreased odds of dying at home or in hospice. Next slide. And in looking at data from Dr. Arpan Patel's group, one of our speakers here from UCLA, we know that there are racial and ethnic disparities in palliative care utilization at the end of life for patients with advanced liver disease. Using the nationwide inpatient sample, Dr. Patel looked at the terminal hospitalizations for patients with advanced liver disease from 2009 through 2013. In this study, he found that only 30% of our patients with advanced liver disease received palliative care consultations at the end of life. Ethnic minorities were much less likely to receive palliative care consultations and actually had odds of about 20% lower odds of being seen by palliative care during their terminal hospitalizations. Next slide. So in summary, we know that there are disparities in deaths, differences in deaths at home and in hospice, and differences in palliative care utilization at the end of life for patients with advanced liver disease, but we also know that we see similar trends in patients with advanced cancers, heart failure, and kidney disease. Advanced slide. So I think it's important to take a step back so that we can see based on what we just reviewed what the impact could be of culture on end of life care for our patients. Advanced slide. So what is culture? Culture are the customary beliefs, behaviors, attitudes, practices, goals, and core values and preferences of a racial, ethnic, religious, or social group. Culture frames how individuals see the world, attribute meaning to their daily lives, and persevere in the face of fear and suffering. Advanced slide. So when we're thinking about culture, it's important to not limit culture to elements of ethnicity and race, but to acknowledge that many parts of an individual's identity shape their culture, in other words, shape how they see the world. Factors such as gender identity, sexual orientation, education, and socioeconomic status. When I think about myself, I think about how I see the world from the framework of being Black, of being a woman, of being a Nigerian immigrant, of being a physician. And I think what this figure also highlights is that cultural identity is not only shaped by many elements, but also has various elements related to intersectionality as well. Advanced slide. Importantly, our cultural identity and all the things that shape it also shape our health beliefs and practices, notably how we like to receive medical information, how we like to communicate with our physicians about our illness, whether we like to incorporate our families in our decision-making process, our preferences for end-of-life care, and even as far as shaping the way that we find meaning in life, meaning in illness, meaning in suffering, and meaning in death. Advanced slide. So with that being said, there are many consequences of delivering culturally insensitive care. When it comes to communication, not incorporating elements of an individual's cultural identity and how they see the world could result in advanced slide, illness and prognostic misunderstanding, late advanced care planning, and the receipt of burdensome and potentially non-beneficial treatments. When we see individuals as isolated and we don't incorporate their families as they define their families and larger communities in our conversations related to end-of-life care, we see some of the following outcomes. Advanced slide. Physical, emotional, and or spiritual distress, underutilization of supportive care services like palliative and hospice care, and complicated bereavement. Advanced slide. All of these things can result in the following conflicts that include medical mistrust, moral distress, and importantly, may worsen inequities and disparities in health care. Advanced slide. So as we go through these cases and we go through our discussion at the end, one of the things we want to emphasize is avoiding extremes in thinking. So first, the importance of avoiding cultural paternalism. So when we're approaching issues related to culture and end-of-life care, it's important for us to examine our own biases and our own value systems and to make sure that we're not applying those value systems on our patients and their families. As we discuss the first case, I want you to reflect on your value system when it comes to medical decision-making and the role of patient autonomy versus family decision-making in that process. I also think when it comes to cultural paternalism, thinking about how we define a good death based on Western values as opposed to how other cultural values may define a good death. Next slide. The other thing we want to absolutely avoid is cultural stereotyping. So back in that slide that showed the multiple elements that go into identity, culture is more than race. It's more than ethnicity. And many elements shape how we see the world. And one thing that we absolutely want to avoid is having us go into rooms, seeing an individual of a certain race or ethnicity, and presuming that they have a specific form of communication preference or end-of-life care preference. Advanced slide. We really want to be centered here and focus on how to approach these conversations with cultural humility, where we're having a process that's deliberate, that allows us to minimize the influence of our explicit and implicit biases, our own value system, so that we can approach these conversations in a way that acknowledges and supports patients and their families based on their varying backgrounds. Advanced slide. So back to case one, we have our 62-year-old non-English speaking woman with new multifocal HCC. Her daughter is usually used as the interpreter during these visits. She comes to clinic alone, and you actually share the results of this new diagnosis of HCC with a medical interpreter, which leads to unanticipated distress. And her daughter says, all information about my mother's medical care should go through me first. Next slide. Potentially, this case highlighted for you tensions around patient autonomy and surrogacy and the use of medical interpreters for patient and family communication, which we'll discuss with Dr. Woodrell. Next slide. So case two, just to review, was a 72-year-old man with NASH cirrhosis who was very sick in the ICU. His family wants everything done and is praying for a miracle, and they also expressed distress that he's being denied care based on their background. Next slide. Maybe in this case, you also saw mismatch in the patient and family and team's prognostic expectations. The patient and family sharing the importance of religion and spirituality and how you would approach that in an end-of-life care discussion, and how you would approach a discussion when patients and family named racism at the encounter. Advanced slide. So with that, I'm going to pass on to my colleague, Dr. Woodrell, who's going to talk about the role of deliberate communication practices in promoting cultural humility in clinical care. Thank you so much. So we're going to spend the rest of this session talking a bit about communication and some of these specific themes that Dr. Ufray just mentioned with the two cases. I'm a physician practicing in hospice and palliative medicine, and will present some of the ways that we think about approaching these cases in a way that promotes communication around end-of-life care that we hope to be as supportive as possible to patients and their families. And none of these approaches are meant to be a one-size-fits-all approach, but rather a way to be thoughtful about thinking of these issues and to avoid walking into the room with assumptions. Next slide, please. So the way we communicate with patients and families really can influence how they experience their illness and how they experience the healthcare system, of course. How we communicate can impact how much they understand about their illness process. It's also an opportunity for us to elicit their preferences, their concerns, and answer their questions about their care. Practices like asking open-ended questions that we're gonna talk about a lot during this portion, and routinely asking about their preferences for how they receive information and how they make decisions and with whom, are really an opportunity to also hand power back to the patient and family in a clinical encounter that really has an inherent power dynamic to it with the patient and their families in a vulnerable position. Then the other point I wanna make about some of these techniques is that they can really provide us as clinicians a framework or even a skill that if honed can be used effectively even in situations that might be stressful or even at the end of a long day. These approaches do not, of course, eliminate the bias of individuals, but what they do provide is a open approach and environment for patients and families to be heard and to receive information. Next slide, please. We're gonna go through the cases in a moment, but first I wanted to talk about preparing for discussions that might be challenging. Preparation is really critical to ensure that they go as well as possible in terms of having the time and the space and the right people in the room to help ensure that your conversation is effective and meets the needs of the patient or their family or both. So the first point is how do you even know when there might be a difficult conversation coming, particularly centered around end-of-life care? So you might be aware that somebody is approaching, that the prognosis is limited, but it might also be another topic that has the potential to be emotional, including disclosure of a new diagnosis of cancer or alternatively being told that a therapy is not available, like liver transplantation. And then another scenario where you might expect to observe or experience tensions or challenges in communicating would be if you know that there's complex family dynamic, for example, if you've previously observed conflict between family members. The second point is it's, I think, really good to be deliberate and plan ahead for these conversations. Think about who should be in the room, thinking about what data are needed. Would it be helpful to include, for instance, a long-time and trusted outpatient physician if you're the member of the inpatient team, whether it's in-person or just getting their impressions? And I think it's important to also pre-meet with the people that will be in the room and establish what we think of as really a headline for the meeting, because when the messaging is mixed from different people providing care, I think it can be distressing and not therapeutic for the family and the patient. And then the third point I wanna make is, I think it's really important to normalize the involvement of other disciplines in these conversations and not try to, if you're a physician, for instance, to go it alone. Involvement of a social worker can be helpful to address psychosocial concerns and distress that arise in the meeting, and also they can provide and help you think about resources that might inform the plan or disposition moving forward. And involving a chaplain can be helpful because these conversations may precipitate existential distress, spiritual distress. Of course, in the real world, you won't always be able to do this, but normalizing this approach is important as much as possible to comprehensively address the multifaceted needs that come in this vulnerable time for patients and families. Next slide, please. So we're gonna go back to case one, which, next slide, please, to remind you, is the woman who is 62 years old and has a new diagnosis of HCC that she learned about by herself. So the first point or issue we wanted to talk about with the case is the use of the medical interpreter. And in this case, the person who was doing the visit used one, which is completely appropriate. And thinking through it, there might be a few ways in this scenario that things could have gone better. There are a few practices that can enhance communication when there's a language discordance between the providers and the patient or family. And we wanted to just talk first about in-person interpreters, or in the case of lack of availability or during pandemic, having video teleconference available can be really helpful as compared to a telephone interpreter because you can see faces and body language. The same goes for the use of masks. If you can get people to a place where they don't need to be masked, that can also be helpful. And then the second point we wanted to make is that we talked about pre-meeting in the previous slide. Including the interpreter in that pre-meeting can be helpful for a couple of reasons. Number one, so that the interpreter is prepared so that you can share that this might be a potentially very emotional conversation so that they can prepare themselves as a participant, but also so that they can think about and possibly discuss with you how the information specifically is going to be stated so as to give the information as gently as possible. Next slide, please. And then I think many of us have probably had a clinical encounter where the use of an interpreter is offered and it is declined by the patient or family. And while I have been in situations where the response has been, well, that's just our policy, I think there might be other ways to approach it where you can dig a little deeper. Number, first you might just share with the person that's declining. We wanna make sure that everyone in the room is able to participate, understand, and be heard. And then secondly, another way to speak about it might be to offer that we want everyone in the room to also be able to play the role of whatever their role is relative to the patient rather than having to multitask. But if the person continues to decline or sort of insistent, it might be a sign that there are communication preferences that have not been elicited. We're gonna talk more about doing that in a moment, including who's in the room and how much detail a patient or family wants to receive. Next slide, please. So the takeaway for just this portion of the case, I would say there's a few things that could have been done differently. First, consider asking about communication preferences earlier before the serious discussion takes place. Example might be if you are ordering an imaging study that you know is critical to the medical treatment or the course or prognosis, it might be a good idea to ask at the time of ordering the scan rather than waiting for the results to come back to ask how and to whom the results should be conveyed. Secondly, pre-meeting with the interpreter could have been helpful in terms of softening the information in the event that the information might've been conveyed in a way that was upsetting. Next slide, please. So the next part of this case we wanted to talk about was is tension around patient autonomy and surrogacy. And in terms of a family member requesting to be the sole recipient of information, it does get complicated. Like we've said earlier in the talk, we don't wanna make assumptions. And at the same time we have to exist and function in this particular medical and legal culture that we practice in. And when we get to transition, when someone gets to a transition to really being close to end of life, it's really critical that we are clear about eliciting and honoring patient wishes. So the first point to be made here is not making assumptions about a particular familial structure or decision-making process. And I think it's also worth mentioning that I think it's important to be thoughtful about who we're sharing information with. I think in any stigmatized condition, HIV is an example, but also numerous causes of liver disease are pretty stigmatized, including alcohol and viral hepatitis. So it's very possible that people have not discussed with their family before they got this sick, the nature of their liver disease and having an awareness of that can be important. Next slide. So, and I think it's just really important to say in this particular case that there are many ways that people do define families in different ways that people interact in this context. So there may be, of course, biological family at the core of the patient support system, or alternatively, they may not be in close touch or that those people may not be involved in the person's care. Legal family, of course, can somewhat differ as well in terms of marriage, adoption, et cetera. And I think it's also really important to point out that some people will have a group of people that are more of a chosen family, people who function as family who don't fit the other two definitions per se. There may also be someone who could be from the family or outside the family who acts as a caregiver or so-called family or informal or unpaid caregiver. I find in my own practice, people usually don't self-identify with that term, but basically, this is the person that gets the person to their appointments, helps them get their medications, and helps them sometimes with daily activities that are more challenging in the face of a serious illness. And then there's also the role, there might be a decision-maker. This could be a named healthcare proxy or healthcare power of attorney, or just the person who's next of kin, as it were, in whatever your state or local laws are, they differ across states in the US, who would be the person's decision-maker in the event of the patient loss capacity. And so the takeaway from this slide is really that these could all be the same people or they could be very distinct groups. And in order to honor patients, you know, autonomy, which is et cetera, I think it's important to ask or try to figure out in each situation who the person's important people are. So next slide, please. And so we basically have to ask, I mean, sometimes it depends on how much information you have, going back in a medical record, but, you know, asking questions like, who helps you with your care? Have you ever named a healthcare proxy? Or simply who are your supports or who's your support system, can be helpful in trying to sort some of these things out. In more complicated cases, some people you could call within your health system, depending on availability, it might be social work, legal, and sometimes you could call palliative care. All of these groups think about these issues frequently in their own practice. Next slide, please. So to return to one of the themes from the first part of the case, it can be helpful to ask people about their communication and information preferences, ideally before you have a serious discussion. And you can certainly involve family in this discussion as appropriate, if the patient's okay with that. Some have suggested that question, sorry, some suggested language for questions might include who should participate in discussions about your care. And it can be helpful to normalize these questions. Sometimes, you know, to say something like, I always ask people, or just sort of naming that some people are very detail oriented and want to know all about their care and others prefer an overview and others still prefer to have all the information flow to someone else and then have them filter or share that information for them. Next slide, please. So I would say the takeaway points here would be that number one, exploring who's important and who should be included in the discussions is really important. And then also to ask about information preferences, how much and how patients want to receive information. And that's an easier discussion before serious news is communicated. And then also it's important for us to all document when we do have these discussions so that number one, the patient and family don't have to keep having them and also so they don't have to keep, you know, really repeating themselves advocating for to make sure that their preferences are met. Next slide, please. So we're going to turn to case two now. And next slide. And just to remind you, this is a 72 year old man with Nash cirrhosis and who's critically ill with a very poor prognosis. So the phrase highlighted here is the family wants everything done, which is something that I know I've heard many times or said in the setting of an ICU. And to me, what stands out there is that it could be a sign that there's a mismatch between what the patient or the family understand about the medical situation and what they're hoping for mismatched with what the medical teams know and expect in terms of the prognosis. And other phrases you might hear that could be a tip off of this could be the case would be hearing that the family has unrealistic expectations or sometimes patients or families might be labeled with poor health literacy. Next slide, please. So I want to take a step back from the case and then we'll go back in to talk about one of the core communication frameworks that we use in palliative care because it presents a sort of anatomy of a serious illness conversation. And this is material that comes from the Vital Talk group. Their information is on the slide as well as in our references. And you can go to their website to find out more. We'll go into more details with regard to applying this to the case on the coming slide. But just in summary, the first ask is referring to in a conversation asking the patient or family what they know and then also asking permission before proceeding to delivering the news or providing an update. The tell is that update and is ideally delivered first with a short declarative headline. This delivered without medical jargon and then is followed by a chance for them to respond. And then the second ask refers to exploring how the information landed using open-ended questions and also asking for them to share their understanding after receiving the information to understand if further clarification is needed. Next slide, please. So in the case of this case, in terms of the first ask, you might ask what is your latest understanding of what's happening with the patient? What have you been told so far? You don't have to have them start from the beginning. And also, I think it's important to really try not to feel like they're being quizzed so that they don't feel shamed for not knowing every detail of what's happened. It's really a way for us to get a sense of where they are. And I find it can be helpful to even provide reassurance if they're having trouble, just thanking them for sharing what they understand and saying, this is helpful for us and don't worry, we're gonna talk about it in a second. We just wanna make sure that we give you all the information that's needed. Next slide, please. So in terms of tell, you wanna have decided beforehand on a headline and that's really so that you can deliver a clear message and also to check to make sure that everyone participating in the meeting is really on the same page. You also wanna ask permission before proceeding and you might use language like we have some serious news to discuss. Would it be okay for us to share or to proceed? You wanna use short, straightforward declarative statements and try to avoid jargon. So an example in this case might be something as simple as their condition continues to worsen and just despite receiving maximal intensive care. So like I said, try to avoid jargon. We really do try to do that in the headline but it doesn't mean you have to omit medical details completely. I've worked, I've been in meetings with hepatologists so many times who do a really excellent job of describing extraordinarily complex and nuanced medical phenomena but you want to before doing that signpost for the family and what the overall message is. And you don't wanna go into those details if there's a strong emotional response, you wanna pause and allow that time to process what they've heard so that when you do proceed, they're more prepared to receive information and listen. In addition to silence, one phrase that I and colleagues use frequently that's taught in vital talks, educational materials, for instance, is something along the lines of take your time, we're here. Addressing emotional responses is a whole that, you know, we have ways, frameworks we use to do that, and it's beyond the scope of this talk, but I would encourage you to visit either Vital Talk or another communication resource to learn more if you're interested. Next slide please. So as noted before, the second ask can be exploring where they are with the information, asking them about hopes and what's important. It can also be a way to assess understanding. I just, this is really important, I think, to contextualize these conversations because they can be hard and, and we in medicine are very plan oriented. I think that in a meeting like this, it won't always be readily apparent what the next step should be, and it may take more time or further discussion and developing that plan may require in collaboration with other people. Other teams like intensive care, palliative care, social work and chaplaincy. Next slide please. So takeaway points from this part of the case would be assessing understanding before and after you deliver serious news. Use straightforward headlines and avoid jargon and use open ended questions to explore sort of where to go from there. Next slide please. How do we support patients and families when they invoke religion or spirituality in the discussion in a, in a medical discussion. From an academic standpoint, we don't know much about this realm that's specific to the people who people who have advanced liver diseases. But we do know from research and serious illness in general that people experience existential and spiritual suffering in the context of illness and the uncertainty that comes with it. So we have an illness where clinicians are really not trained in this area, and religion and spirituality are diverse phenomena. So the knowledge base is really broad so how can we help. Next slide please. I think the first thing is to, to affirm what they're sharing and try not to be dismissive. And it could be through asking again asking questions, giving affirmative statements like we share your hope, asking questions like what would a miracle look like to you, or asking about where they get their strength to allow them to talk more about the importance of religion and spirituality. Of course, if you can offer chaplaincy or clergy. One thing I just want to point out is that chaplains are not are very frequently not clergy, and you can offer them as a resource for the patient or family to speak with. And the chaplain can sometimes facilitate additional access to specific clergy or other religious figures, while the person's in the hospital. Alternatively, you could offer that you can involve people from the patient's community to participate, to participate, even in family meetings I've had cases where will bring someone from religious community into the meeting and I think it's can be really helpful particularly in a situation where the patient's religion weighs heavily on their decision making process. Next slide please. And so the last theme from the second case that we wanted to talk about was, you know, the family of the patient in the ICU expresses distress that he is being denied care based on his background. And in this scenario. We want to sort of think about how do, how can we ask for permission but also telegraph, our own permission when something when family brings up either racism or concern that that a personal attribute is affecting their care. How can we give them, how can we not close the door on that. How do we create a space to let them be heard. And then how do we identify ways to support. And this is also material that there's additional material that vital talk provides in this in this area that was developed by faculty there. This is based in part. Next slide please. So ask open ended questions is sort of recurring theme here. One example might be it sounds like you have concerns about racism, what would you, would you like to talk more about that, asking how we can provide support, and then also, particularly can I think important to to ask if there's anyone who they trust, who could either be that we could connect them with or could participate in discussions about care. I think it's also important to keeping in line with the idea of not closing the door when someone is introduced this into the conversation is to favor the open ended approach rather than giving a terminating statement like what's written here you're strong and we'll get through this. Next slide please. So, if you think it's helpful and you want to involve other team members. Then I think that's important it just would do so with the permission of the patient or family and specific actions or resources in the context of a health system might be connecting them with a patient advocate, or many institutions have reporting systems if there's something that you think should be reported as specific to the care of that patient or individual. Next slide please. So this is just a series of overall take home points throughout the two cases and the five themes we just went rapidly through. So for people you take care of longitudinally eliciting preferences about communication and information. It's really important for when those serious discussions do arise. Identifying a surrogate decision, particularly a health care agent, allowing the patient to name a health care proxy can be really important particularly for those who, who's the structure and the people surrounding them don't necessarily reflect the familial structure that the surrogate laws, sort of privilege in terms of next of kin so you want to allow them to say this is the person that I would want making decisions for me. Planning ahead for serious discussions is always better interviewing, including pre meeting, and with the interpreter thinking about who should be there and what is going to be said. Not doing this alone I think this is really important to the extent possible because the distress can be so multifaceted using frameworks like the ones presented here, and there's others out there to have a sort of scaffold for your discussion, not dismissing the importance of spirituality and religion, and then finally creating a space where patients and families can address mistrust. If it's something they want to talk about and would find helpful. So that's the last content slides and next slide please. We have provided some references here this is from both halves of the talk. And then we're going to move to questions now. Okay, thank you very much Dr. Woodrell, Dr. Ferry for those two excellent presentations I do feel like I really learned a lot about communicating with a sick and complex patient population. We're still waiting for some audience question and answers. Just please use the chat box to ask questions at any time. While we're waiting I wanted to get our panelists involved and so I wanted to ask Dr. Patel and Dr. Wilder, the speakers alluded to that most of the situations that we end up being faced with this challenging communication tend to occur at the end of life during acute hospitalizations, such as one of the cases that Dr. Ferry presented. Are there ways that we can incorporate some of the points regarding cultural humility in upstream conversations so that we don't deal with these challenges towards the end of life and I'll ask Dr. Patel first. Yeah, first of all, that was an incredibly powerful presentation from Dr. Zuffre and Woodrell so thank you for being able to participate. I think a lot of points resonated with me that I think I could share in tandem with that question I think a lot of it relates to the fact that we're so plan oriented during our visits that you know when we take a step back and think about, think about it a lot of times patients, a lot of times share their culture and share certain things unintentionally to us and we sort of feel that way because, you know, either it's not focused on the plan for transplant or it's not focused on the plan moving forward. And I think that, you know, being able to engage with patients ahead of time, allows them to feel heard allows us to, you can think of a patient who shared with me that he, his specific tribe, he's Native American had had certain ways of dealing with communication preferences and we uncovered that he would never want a transplant because you would never want a piece of someone's body in him and if I didn't know that months and months ahead of time. And I think it could have led for some really difficult conversations when he got sick. And I think that's kind of a, an example of taking opportunities earlier to understand people so that you can avoid or maybe even circumvent difficult communication later. Thanks very much. Dr. Wilder, do you have any other thoughts on that question? Yeah, I totally agree with Dr. Patel and again I hope that those are wonderful presentations on a subject matter we don't probably engage in enough. I would add that, that I think that having very deliberate clear conversations with all of our patients and hepatology about where things can go, making it very clear how sick they are, making sure we understand that they understand how sick they are. And working with them earlier on to define what it might look like at the end and how we can best navigate them, you know, through all these processes I think are important conversations to have. And, you know, we began to think about, you know, how do we engage patients about, you know, a will. I mean there's so many things that we see in certain populations where they're important conversations about how to navigate end of life. And if not end of life, how do you navigate sort of extremely sick, you know, scenarios and how do you want that information communicated and how do you want these things addressed. I think we need to be very deliberate, particularly with the liver patients about having those conversations early on. Thank you very much. Thank you. And I want to add my thanks to Nneka and Chris for their outstanding presentations which were, you know, beautiful and lucid. We have a couple of questions now from our audience. One comes from Lauren Feld, who congratulates you for your great talks, but asks how do you balance when patients are not being offered certain therapies due to poor prognosis or other reasons, such as transplant or renal replacement therapy. Discussing why they are not being offered those therapies can be very difficult. So, welcome, your, your thoughts on this very important question. I mean, I can certainly start. I'm sure a lot of us have been in this sort of circumstance before and I think that really being able to incorporate and respect and feel, allow patients to feel heard when they have these really emotional discussions and incorporating best practice about breaking bad news is really important. I think we, a lot of times we focus on the plan. Like, you know, we are, we're, the next step is going to be this, but taking the space to understand someone's culture, allow them the space to hear this news and then really exploring their values and goals to help decide next steps is important. I think that, which many of us will discuss, so much of culture, so much of potentially resentment against the medical system, so many things related to, you know, microaggressions we have can come up in these conversations. You just have to, we have to feel like we're hearing all those things and put, and allowing patients to participate in those conversations before, well before we make a decision about them. Yeah, I would just add that it is vital that as we make these decisions for all of our patients with respect to care, care that we either provide or not provide, that we ensure that they understand why. I think that we've become so focused in trying to provide care that we don't take the time that we need to sometimes to make sure they actually understand the decision making process. I mean, so I think a way to navigate this kind of issue would be to ensure that the patient and their family members or loved ones understand the decision making process and taking time to explain that with them and allowing them the opportunity to ask questions and probe to understand the, you know, various sort of pathways with respect to their care and why it may be unique to them versus other people. That's really important. Even people who you may think have distrust or may question or have concerns about your decision making process provider. If you have a very transparent, open approach with respect to communication and ensure you take the time to allow them to understand the decision making process that will help you navigate a lot of these issues before they become a bigger problem down the road. I would just also, I would definitely second, all of that, and particularly the use of best practices and delivering serious news. And I would also, I think it's almost, I mean, it's so hard to deliver bad news where like something's not available, but it's, I would say, even harder when it's probably not available, but it might, you know, so that sort of uncertainty, I think, also, particularly in the context of liver disease, that how to communicate that ambiguity when you want to, you know, it's almost a decisive message, but there's this small window. I think we have a lot to learn, we in the whole, you know, medical field about how to best communicate that kind of uncertainty. I also think, and I agree with all of the points that have been shared, but there's a perspective that our patients have this like acute tipping points, and then we're making these rapid decisions on the therapies that we can or can't offer them. But I think what we do know in practice is we all have patients in clinic who are getting progressively more frail, patients who maybe have lost a significant caregiver, patients who have had multiple hospitalizations, like that patient in the second case. And I think we should also get into the habits, understand that it is our role as hepatologists, when we're seeing someone who is having a stepwise sort of fall down in terms of their health, their prognosis, their frailty, to try and start to have some of these serious conversations early in the outpatient setting, as opposed to having these conversations happen in an acute care setting where emotions are high. I think all of us have been in these situations where patients and families are completely surprised, even though we see this trajectory coming. So I think we do have to normalize the process of identifying sentinel events, key moments when our patients are actually getting sicker in the outpatient setting to start to have some of these conversations. Thank you all very much. I think we have time for just one more question. Hopefully we can get to it before time ends. This is an interesting question regarding strategies that you can use when you see a family is being labeled or treated poorly, and there's a possibility of bias at play. And the person gives an example of a family she met where security was called because the wife was crying loudly. Any thoughts that anyone has regarding that? I have a few quick thoughts. One, just to say, involve as many neutral parties as possible to give them access to that. And then also, in terms of charting, I would just add in terms of labeling, I've seen it happen in the chart before, and I try to be as neutral and parsimonious as possible in how I write about it, so that people don't, because it will get carried forward in the chart. I would add, I think the scenario you're describing here, just reading the Q&A, is a clear example of bias. And I think that in medicine, we need to be comfortable acknowledging it when we contribute to these scenarios occurring. And I think that's an important way of, again, beginning to navigate this specific event and hopefully begin to address the trust that was lost among those family members. So I think we need to acknowledge it, and I think on the back end, we need to make sure that we have some sort of opportunity to provide learning for the individuals involved around how that happened, about why they were labeled this way in the chart, or why were the police not appropriately called. And that's the entire team, not just physicians. So it's difficult to predict and know exactly what's going to happen, right? We can do training, but unfortunately, we are human beings, and these things are going to happen. But what can we do in that moment around acknowledging it and addressing it for that family right there? And then what can we do for our teams forward to ensure these types of things don't continue to happen? I couldn't have put it any better. Thank you, Julius. Okay, great. So we are out of time, so we will end the webinar here. I just want to thank my co-moderator, Dr. Chung, as well as our fantastic speakers and panelists for your time and your knowledge. And of course, thank you to our audience for your time and participation and your questions. And please stay tuned regarding future educational initiatives from ASLD. And we look forward to seeing all of you at the virtual liver meeting or TLMDX on November 12th through 15th. But this will be recorded, and so it will be available for viewing on Liver Learning. So thank you all again for attending. Thank you.

equity

diversity

inclusion

communication

end of life

advanced liver disease

cultural communication

decision-making

cultural humility

cultural identity