Patients with end stage liver disease and decompensated cirrhosis have an average life expectancy of 2 years without transplant. Outcomes are worse among those who are frail. Symptoms are common, including pain, ascites, encephalopathy, and pruritus. Patients with end stage liver disease are often some of the most disadvantaged patients we care for. Caregiver burden is immense; divorce is common. Some will go on to receive a transplant, but many will not. Many are confused about the diagnosis and feel poorly supported. Prognosis is fraught, as the worse your prognosis (i.e. lower your chance of survival), the higher you move on the transplant list. Advance care planning is rare (or serious illness communication for those of you who don’t consider this advance care planning). Outcomes of in-hospital CPR are worse for patients with end stage liver disease than outcomes for patients with advanced cancer. Though integration of geriatrics and palliative care into the care of patients with end stage liver disease holds obvious potential, major barriers remain.
In this week’s podcast, we talk with Jen Lai, Ricky Shinall, Nneka Ufere, and Arpan Patel about end stage liver disease from a geriatrics and palliative care perspective. We talk about the tension patients face between putting on the “best face” to be listed for transplant (e.g. full code, goals focused on extending life). We talk about the potential and limitations of the MELD score for prognosis, and how frailty further stratified risk for older patients with end stage liver disease. We discuss what is needed in terms of improved communication around the time of diagnosis, creating a safe space for serious illness communication, and resources for patients and caregivers (including this Canadian information resource). And we have a round robin about treatment of common and challenging symptoms – yogurt makes a surprise appearance.
And…Radiohead! Great request…thank you Nneka!
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, we got a full house today.
Alex: We got a full house with some very important people today starting with Jen Lai who’s a transplant hepatologist, an associate professor of medicine, and director of hepatology and clinical research at UCSF. Welcome to the GeriPal PodCast Jen.
Jen: Thanks for having me.
Alex: And we have Ricky Shinall who is a general surgeon, and palliative care physician, and assistant professor of surgery and medicine at Vanderbilt. Welcome to the GeriPal Podcast Ricky.
Ricky: I’m so happy to be here. Thank you for having me.
Alex: And we have Nneka Ufere who is a transplant hepatologist and an instructor of medicine at Massachusetts General Hospital. Welcome to the GeriPal Podcast Nneka.
Nneka: Thank you Alex and Eric for inviting me.
Alex: And we have Arpan Patel who’s a transplant hepatologist and assistant professor of medicine at UCLA in the West Los Angeles, VA. Welcome to the GeriPal Podcast Arpan.
Arpan: Thanks guys. Happy to be here.
Eric: So we’re going to be talking about all things end-stage liver disease. I think that’s our topic, we’re still working on the title, but before we jump into the topic, Nneka, I think you have a song request for Alex.
Nneka: Yeah. So the song that I requested is High and Dry by Radiohead because it’s one of my favorite bands and High and Dry is one of my favorite songs.
Alex: Great one. Yeah, saw Radiohead perform when they’re opening for REM in Tel Aviv. Yeah, great performance, they did that song Creep and their introduction was, “This is our song creep, we have other songs.” That was the day Jerry Garcia died, a sad day. Anyway, wonderful band and here we go.
Nneka: Awesome job, Alex.
Alex: Great choice.
Eric: Nneka is there a connection between that song and end-stage liver disease? That’s something around like ascites or?
Nneka: Maybe ascites and trying to get our patients dry, that’s the closest I can make to that.
Eric: So this topic is going to be focused on endstage liver disease and all the things that palliative care, clinicians, and geriatricians should know about it. Nneka I’m going to turn to you first, how did you get interested in liver disease as a whole, as this is your focus as a physician?
Nneka: So liver disease as a whole I think in med school during my sub-I, I had an amazing attending Jeffrey Crippin who is a transplant hepatologist at Wash U who was my sub – I attending and I loved working with him and learning from him. And that really drew me to thinking more about hepatology as a career, so it’s just a show of the impact of one person on my trajectory and my path. And then palliative care research and pathology really was not something that I had planned to do going into fellowship.
Nneka: My fellowship application essays actually were focusing on translational research in viral hepatitis C, so what I’m doing currently is very different. And I think what really drew me to this area was during my first year of GI fellowship both in the inpatient setting and in the outpatient setting, seeing how much our patients and their caregivers were suffering and how little I had available to help them both clinically and also in looking at the evidence. So that’s what really drew me to this area of investigation and clinical work.
Eric: Yeah. How about you, Jennifer? What drew you into palliative care?
Jen: So actually what drew me into palliative care was first what drew me into geriatrics and my focus in research, which is frailty and functional status assessment. And I was on service similar to Nneka’s story where I was just so influenced by one person, Nancy Ascher is like the goddess of liver transplantation. I had her as my attending when I was a fellow, and I remember her walking into a room and instead of doing all of these assessments of hepatic encephalopathy, testing for asterixis, or for palpating the belly or assessing for a fluid wave, she asked the patient to raise his arms above his head.
Jen: He couldn’t do it, and it was that moment where we all knew this guy wasn’t going to make it to transplant. And it was this just she knew as a master clinician, as the goddess of liver transplantation, that a patient’s physical function is everything. It determines whether they make it to transplant, it determines whether they can get through to transplant, and I started learning that we actually need to better assess physical function and frailty in order to learn to prognosticate. And then once I got into geriatrics and functional assessment, it just took me down this amazing path into other aging research principles like palliative care.
Eric: Yeah. I’m going to go quickly to Ricky now and then Arpan and both of them, but Ricky interestingly you’re a surgeon who now does… Do you mainly do palliative care? Do you still do surgery?
Ricky: Yeah, I still do surgery. So I mean, my clinical practice is mainly general surgery and I also do palliative care consultation, and I’m not a transplant surgeon. As a surgeon, most of my interaction with end-stage liver disease patients is trying not to operate on them for fear that I’ll make them worse. But I’m very interested in palliative care and especially specialist palliative care as something that can help surgical patients both feel better, and potentially do better with surgery. And so I’m very interested in thinking about and looking for surgical patient populations who could benefit fit from palliative care and especially specialist palliative care.
Ricky: And what really has drawn me to the end-stage liver disease population, is that these patients have a disease that is curable surgically if only we had enough of the raw material to do the operations for everyone that needs it. But who are also suffering from a lot of physical, emotional, sometimes existential issues that I think could potentially benefit from more palliative care attention. Again, both to make them feel better and maybe even to Jen’s point, to get help them get stronger and do better as they wait for surgery and hopefully get their potentially curative surgeries.
Eric: And Arpan, how about for you I’m going to end with this line of questioning. What got you interested in this intersection between transplant hepatology and palliative care, advanced care planning?
Arpan: I think it’s similar to a lot of the answers, especially what Nneka, Jen and Ricky had all said. I think I always had a really soft spot for hepatology because I just felt like we were a field that really cared about the patients and took a lot of that to heart. What I found is a lot of deficits in communication, I feel like patients many times when I’m seeing them didn’t understand what was going on. And with all of the craziness that happens during transplant evaluations, I didn’t really feel like they understood when they weren’t transplant candidates, and so a lot of my research early on really got into well, how are we communicating to patients? What do they understand? And really recognizing that there’s a deficit in how transplant teams are communicating this, and that’s something I wanted to dig in more.
Eric: And these are really tough things to communicate, even the definitions about what all of these different things is, is challenging concepts. I wonder if we can maybe just start with that, as we think about chronic liver disease, end-stage liver disease, cirrhosis, what’s the differences between each of those? How should we think about that and how should we communicate that with our patients?
Arpan: Yeah, that’s a really great question and I get a lot of times. End-stage liver disease I feel like runs in two camps, there’s decompensated cirrhosis, and then liver cancer which is hepatocellular carcinoma. And for decompensated cirrhosis, the way that I describe it to patients, it’s like you have cirrhosis which is the scarring of the liver, but it’s like when your liver or stops working. And all of these things you get like fluid in the abdomen, confusion, bleeding is all of a consequence, it’s stopping, it’s not working as well. And then liver cancer is something that happens in the context of all that scarred tissue in the liver and you can get a new cancer. So some people can have one, some people can have both, and that’s how you usually describe both of them as serious illnesses.
Jen: Can I add to that too?
Jen: You mentioned Arpan that there’s the decompensated cirrhosis, but then there’s the compensated cirrhosis patient who this is the patient Ricky could see who doesn’t even know they have cirrhosis, they’re walking around, but the difference between compensated and decompensated can happen like this. It can be one surgery, it can be one COVID infection, I mean, in a second they can go from being completely feeling normal, to suffering significantly and I think that’s where this palliative care interface, this communication is so important when we’re counseling our patients with compensated cirrhosis. To walk that fine line of communication of how do we explain the trajectory of their illness, the potential trajectory of their illness and how dynamic that process can be?
Eric: Well, what do we know about how well we explain those things to patients?
Arpan: I think that there’s been a number of studies that have looked at this recently, I think we know at least that we’re not doing a lot of advanced care planning as one in particular, but even in patients understanding what cirrhosis and liver diseases is. From what I gathered from literature that we’ve had so far, a lot of them don’t even know that there is a chance that they could die, that they don’t know that there’s a chance that they can decompensate. And so I think that’s part of the challenge is the fact that they’re in this context of things are rapidly changing and they hear something like transplant, but they don’t really recognize what can happen if we don’t get a transplant. And I think that’s what we’ve understood is that that missing piece of being prepared for what can happen if you’re not getting a transplant is missing in a lot of cases.
Nneka: And I think I’d also add to that, that one of the studies that we did here that honestly opened my eyes so profoundly to issues and limitations related to illness understanding in our patients with liver disease were qualitative interviews that we conducted with patients and caregivers. Where we just asked them at the beginning, tell us about your initial experiences being diagnosed with liver disease. And that was an opening question to actually warm them up for another aspect of the study that we thought would be our primary focus, but when we ask patients and caregivers that question, and these are patients with end-stage liver disease who are in the outpatient setting, the majority of them ended up talking for about 10 to 15 minutes about where they were and exactly what happened when they were diagnosed with decompensated cirrhosis.
Nneka: And a few of the things that they said struck me, because even I as a hepatologist didn’t fully appreciate what their experience was with diagnosis. So the first thing that struck me is the fact that they said that I had no idea that I had liver disease nor did my loved one. And so they would say that they would have days in which they were getting more fluid, their legs were getting swollen, the caregivers would state that he or she was looking more and more confused, and it really wasn’t clear, or they’d have this acute episode of them vomiting, blood, having a variceal hemorrhage. And all of those circumstances in which someone acutely develops decompensated cirrhosis, it’s a serious and scary and a shocking thing that oftentimes leads to a hospital, but these patients had no idea, the majority of them, that they had underlying cirrhosis.
Nneka: So I think that was one thing that really struck me. And then the second thing is that a lot of them stated that after that initial decompensating event, which oftentimes led to a critical care stay, a long hospitalization, that they left from the hospital and weren’t told that they had liver disease. And they didn’t realize that they had liver disease until multiple hospitalizations, or finally making it to an outpatient hepatology appointment. And so I think that, that really highlights that our patients and their loved ones have very limited understanding of their illness, and also receive very little illness education even when they’re presenting with a life threatening presentation.
Ricky: Yeah, I’ll echo a lot of what Nneka has said in some focus groups that I’ve done with patients and caregivers. And even on a more basic level is it’s hard for people to understand what the liver does, it’s hard for me to understand everything that the liver does.
Alex: Yeah, me too.
Ricky: And so what it means to have a failing liver is not I think as immediately obvious to people as what it means to have a failing heart or failing lungs. And so I think just the basic concept of what the liver does, what happens when the liver fails, what that implies for your life is just a difficult thing to explain and to understand. I think to Nneka’s point, it ends up really taking a lot of explanation and often from a specialist in liver disease before the patients can really understand what this even is and what this might mean for them for the future, much less to start to think about planning or what they would do in the future.
Alex: So there’s a huge need for better communication around the time of diagnosis and the period thereafter, which may and often is not by hepatologists, specialists, it’s often probably by hospitalists or primary care physicians is that right?
Nneka: Yeah. And Alex, I think that you’ve really nailed it on the head there, and I think that was a big point and a big revelation for me when hearing about the experiences of patients and caregivers. It really showed me that the patients who reach an outpatient hepatology appointment are the lucky one. Those are the ones who are more likely to have social support, those are the ones who are less likely to have significant debilitating illness, and there is a whole host of patients who are in the hospital routinely and that’s where they get their primary hepatology care with recurrent readmissions. And so when we’re thinking even about things like early palliative care, if we are focusing that on the outpatient setting let’s say for a patient with decompensated cirrhosis, that may not be delivering care to patients who are in the hospital who are never able to make it to an outpatient appointment.
Nneka: So I just think that as we think about what is the time of diagnosis, to decompensate is to present with an acute illness that oftentimes leads to a hospitalization. And then one of the things that we need to figure out is how can we support patients and caregivers when they have that decompensating event? When they’re first learning about their liver disease, or maybe not even learning about it at all, how can we support them to learn more about their liver disease, to learn how their lives will change profoundly with this new diagnosis, and to support them as they transition out of the hospital and hopefully make it to outpatient care?
Eric: And in your paper, which we’ll have a link to on our show at our GeriPal website, patients and caregivers also made some recommendations on what they wanted, isn’t that right?
Nneka: Yeah, they did. So there were a number of recommendations that they made, and one of them really focused again on this topic of illness understanding and education. They wanted easily digestible information and whether it be from online, through brochures, through videos, what have you, on what liver disease is and how to manage it. And I think Ricky really raised a key point, that managing liver disease and understanding liver disease is incredibly complex. And so our patients and their loved ones are facing a really high barrier to understanding, and I really think that the hepatology community is now starting to focus on how we can better educate patients and caregivers.
Eric: Isn’t there something like the Alzheimer’s Association, like a website you can go to, you can learn all about dementia on Alzheimer’s Association is there one for end-stage liver disease? Like a place we can-
Nneka: That’s a great question Eric, and there is a fantastic website that has been developed by a colleague of ours who is also in this space Puneeta Tandon, it’s called the Cirrhosis Care Website, cirrhosiscare.ca. And I’ll share a link with it so that I can make sure that I put that website addressed correctly, but she’s really been focusing on these deficits and illness understanding. And has built patient facing and caregiver facing educational tools and modules and videos, so that patients with end-stage liver disease and their loved ones can learn more about their disease.
Alex: Taking one step back, before we started the recording here Jen, you’d mentioned that end-stage liver disease covers cirrhosis and hepatocellular cancer. I just want to make sure we touch on that, how does the cancer fit into this? Do they present differently? Do they present the same?
Jen: I mean, they can present the same, but more often they actually present differently. So hepatocellular carcinoma or primary liver cancer, so it’s like the liver cancer of the liver cells, most often occurs in patients with cirrhosis. So these patients already have a fully scarred liver, but very often these patients with liver cancer actually don’t have all of the decompensation that we oftentimes associate with cirrhosis. So patients with liver cancer may not and often don’t have ascites or jaundice or hepatic encephalopathy, and in fact are frequently asymptomatic from their cirrhosis and asymptomatic from their liver cancer. But of course, like many patients diagnosed with cancer of course have experience the suffering and the anxiety, as well as the symptoms associated with treatments of the primary liver cancer itself.
Alex: So we’ve talked about the causes of end-stage liver disease, we’ve talked about the initial diagnosis period, and then these patients are eventually referred, some of them, the lucky ones, as Nneka said are referred to a hepatologist. And this is where conversations probably start about transplant, is that right? And then do they refer to GI for hepatology or are they referred straight to a transplant clinic? How does that work?
Arpan: Yeah, typically I would say a lot of them could be referred to gastroenterologists in the community, but I think by the time that patients are decompensated many of them end up going to a transplant center and starting a lot of those discussions. And that’s where patients see a whole multidisciplinary team, including a coordinator, a social worker, a surgeon, many other specialists, and then make a decision over that time whether they’re a candidate and then try to educate patients about what to expect from a transplant process.
Alex: I love the multidisciplinary aspect of it, this is where we might start engaging patients in advanced care planning, either the hepatologists themselves or specialist palliative care if they were involved. Is that the idea here? This is where communication ramps up and you engage patients in what Arpan and Nneka I think have termed advanced care planning. There’s some controversy about advanced care planning, our listeners may have heard, yes they’ve definitely heard, is that advanced care planning? What’s going on here? Are you still calling it advanced care planning or are you calling it serious illness conversation?
Arpan: Yeah, aside from that controversy, I think we can all agree that certain things are important like assigning a surrogate decision maker, or discussing goals and values. Whether documentation is the end all be all is one thing, but I think that me and Nneka talk about this all the time, the fact that we have multidisciplinary model of transplant care really does lend itself to integration of palliative care, which is in and of itself multidisciplinary or interdisciplinary. And from many of the qualitative interviews I did at the transplant center for one of my papers, I found that social workers in part of their profession they do some degree of advanced care planning by asking patients about surrogate decision makers, talking to them broadly about their goals and values.
Arpan: But I think as a whole what I found in my interviews is that transplant clinicians really view their role as getting patients to transplant, and assume a lot of those patients already had conversations with their primary care doctors, with their gastroenterologists about some aspects of advanced care planning and being prepared. But as we just found from our discussion, a lot of these patients just don’t have a great understanding of their illness, and that itself is a huge barrier. Because you have on one end a group of clinicians who’ve assumed they’ve had the conversation, and then you have the patients who have been going through this whirlwind of new information and changes in their life and may not be even prepared to have those conversations yet, even once they get at a transplant center and go through the evaluation.
Ricky: In addition to all of those which I think are right on, there’s an aspect that can make advanced care planning fraught in this situation as well. Is as Arpan said, that the view is the transplant clinic is to get you to transplant, and so it can be hard to discuss, and for patients to feel comfortable discussing what happens if we don’t get to transplant? Which is advanced care planning. And also a fear of if I voice that there are limitations on what I’m willing to accept, is that going to affect how I’m viewed as a transplant candidate?
Ricky: In other words, do I need to be knobs right for everything for the transplant center to say that I’m a good transplant candidate? And this was something in the focus groups with hepatologists and palliative care doctors that I did that almost everyone in this call was a part of, that was mentioned a lot. Was this where is the safe space in this process to talk about not getting a transplant and what my limitations are?
Eric: But does it affect?
Arpan: It’s such an interesting area I think of discussion among transplant groups, the fact that can we even entertain this discussion of patients having less aggressive goals? And I think for most of us in the palliative care and geriatric space, we say yes, of course people should be prepared for any outcome, right?
Arpan: But I think there are these real fears among transplant centers about the idea that if you introduce that conversation either patients will decide against doing a transplant against their better judgment, or that it makes the series of their illness trajectory really complicated for a transplant team. If you’re thinking about someone having goals that are changing and preferences that are changing, I think the complexity of dealing with that situation is hard for people to grasp when decisions are being made constantly about their care. So I think there’s a practical issue and just this fear that it might limit people’s confidence in transplant teams when you start having these conversations.
Alex: And stepping back one sec, big picture how many people who go to transplant centers get a transplant?
Nneka: So I was actually going to raise that up because I feel like, and I’m going to gently dip my toe into the ACP conversation. One of the big elephants in the room here is that patients once they decompensate they have a one and two chance of dying within two years in the absence of getting a liver transplant. And patients when they decompensate have about a one in 10 to one in 12 chance of actually getting a liver transplant.
Nneka: And so as we’re thinking about advanced care planning and whether that’s the right term or not, I think we can all agree that this is not a patient population that is the worried well, I also think we can all agree that this is not a patient population that has an indolent condition. When we’re really looking at statistics like that, there is a big sense of urgency of now because our patients are so sick that to delay having conversations about their care, and about their future planning, to the next clinic visit, to three or six or 12 months from now, delaying in that way may actually be too late.
Nneka: And maybe denying them the opportunity to make decisions about their care that really aligns with their goals and values. And so that big elephant in the room, but I worry that not many people know is that this population is incredibly sick and has a very high risk of mortality with very limited options for liver transplantation because of the limited organ availability. And so we need to start having conversations and developing conversation and communication strategies to support the fact that their prognosis is poor.
Eric: Yeah. The interesting thing is I remember back in 2008 when we started our palliative care clinic here we embedded it with a liver clinic thinking, oh, we’re going to just see their hepatocellular patients, the highest risk of those patients those are the folks that we’re going to see. We were really focused on cancer patients, but it turned out Barb Drye who was our outpatient provider said she learned that it wasn’t those patients who got really sick and really bad, it was the decompensated liver folks often who don’t have hepatocellular carcinoma, who have all of these other palliative care issues, that was the population that we really needed to target.
Eric: And I think it’s so hard when we think about, I think potentially one of the barriers here is around like thinking about prognostication in these individuals with end-stage liver disease, or even with hepatocellular carcinoma. And then communicate, like when we talk about goals of care prognosis, discussion about prognosis should become before or in trajectory should come before goals of care or advanced care planning so you know to expect. I’m wondering as we think about prognosticating and communicating these, are there things that are helpful when we think about prognostication in this group?
Eric: I think you mentioned one, decompensated liver failure sounds like that’s an important factor. Are there other important factors we should consider?
Jen: Well, what makes that so complex though, is that at least among those who get transplanted and it’s really the lucky few relative to the denominator, but I mean, since at least the three; Arpan, Nneka, and I are transplant hepatologists we’re biased in seeing mainly transplant patients. But patients are prioritized on the transplant list by their MELD score, which is an incredibly great marker at prognosticating whether a patient will live or die. But for a patient who’s on the transplant list, we can say, “Oh, your MELD score has gone up, you’re at high risk of death,” but it also means they’re at high risk of getting a transplant.
Jen: And so that’s what really makes this conversation about prognostication extremely complex for the transplant patient, for the patient who has the safety net of transplant. What I think is really the thing that needs to be introduced into the conversation when we talk about prognostication is actually frailty, and physical function, this is really what got me into transplant because-
Eric: Because frailty is not in the MELD.
Jen: Frailty is not in the MELD and we have demonstrated time and time again that frailty really adds prognostic value to whether a patient lives or dies. So two patients with the exact same MELD score, the exact same age, all other characteristics the same, ascites, encephalopathy, rates of variceal bleeding, a patient who is frail is the one not going to make it to transplant versus the one who is robust.
Eric: And Jen, how are you defining frail when you’re looking at that?
Jen: Our team has defined it in many different ways, we originally used all of the amazing classic geriatric instruments like the frailty phenotype, ADLs, IEDL, Short Physical Performance Battery, and lots of other teams have used other great metrics like the Clinical Frailty Scale. It doesn’t matter what you use., They’re all extremely predictive. However, recently our team developed the Liver Frailty Index, which is a combination of grip strength, chair stands and balance, so we’ve developed a cirrhosis specific metric that is really performance based.
Jen: And so over the last four years, since we developed that tool, we’ve demonstrated time and time again it really predicts mortality among patients who are listed for transplant above and beyond the MELD score. Largely because again, as the MELD score goes up you’re closer to, but if you are frail like my original story if you can’t raise your arms above your head, we can’t transplant you because you’re not going to be able to get up out of bed after we give you a brand new liver.
Eric: Yeah. What do we know about non-transplant patients? Is the MELD still a good thing to use when we think about prognosticating in non-transplant patients?
Arpan: It is a good score to use, I think that it’s an active area of research in determining the best prognostic score. What we also know is that there’s certain phenotypes of patients that don’t totally fit in the mold, and this is a more complicated topic, patients who may need dialysis or patients with acute and chronic liver failure, they might be incredibly sick. So sometimes MELD doesn’t even capture for those patients their mortality well, and so like Jen was saying, prognostication is a lot more complex than the MELD. And I think even on top of that prognostication there’s so much uncertainty, and that’s even part of what we have to deal with is addressing that uncertainty in addition to improving our prognostication.
Jen: I mean, I love the MELD score because it is so simple, right? Just bilirubin, creatinine and INR everyone can grasp it, but I think the hepatology community got so into the MELD that we lost focus that we have to take care of the patient. And that’s why I love the integration of aging research and geriatric principles, because our cirrhosis patients I don’t know if you guys have had the same experience, I’m sure you have, where you have a patient with cirrhosis who has a very low MELD score like a meld of 12, right?
Jen: And so they sit around and they say, “I’m doing really well what’s my MELD score today?” Oh it’s 12, it’s 15, but then they have multimorbidity, then they have physical frailty, then they have all of these just other conditions, they fell, right? And you know okay your MELD score is fine, but you still are suffering or experiencing all of these geriatric syndromes that are actually going to determine your prognosis much more than this obsession with the MELD score only.
Alex: Following up on that point, given that there are so many older adults who have frailty and end-stage liver disease what is the best method of providing care for them? Is it referral to subspecialty geriatrics, co-management with subspecialty geriatrics? Is it geriatrisizing the hepatologists and that community? And after Jen answers here, I’m going to bounce the same question to Ricky about palliative care and whether palliative care should be primarily a subspecialist model or whether it should be palliatrizing the transplant hepatologist and general surgeons. So Jen, you first.
Jen: Well, my short answer is I don’t know what’s the right answer is, and I’m really leaning on Arpan and Nneka and other individuals in the field like Puneeta to try to come up with models of care that are going to work. However, my tactic has been to try to geriatrisize hepatologists, I think that’s the thing that I feel like is most within my control. And that was one of the reasons our team developed the Liver Frailty Index, is I wanted to give hepatologists and transplant centers a tool to more easily integrate this into just decision making and management.
Alex: And Ricky, you’re a surgeon and you’re a palliative care doc so tell us should this be something where we try and palliatrizing, I just keep making up new words, the hepatologist and the surgeons is possible? You wrote in your paper about a number of barriers, some of them attitudinal towards that shift in thinking.
Ricky: Well, I think there’s a couple things there. I would say one is in some sense, hepatology is already palliatrized because so much of it focuses is on dealing with the sequela of liver failure. And for transplant hepatologists when I’ve talked with our transplant hepatologists, they’ve described it as I’m already basically doing palliative care, I’m trying to keep the ship afloat with whatever I can until they can get to transplant which is the actual therapeutic modality. So I think one of the challenges of a co-management approach is to say, well, what is it that the palliative care doctor would do differently than the hepatologist? And how would they make sure that they don’t clash? Which I think has been less of an issue in for instance, oncology where these models are well established.
Ricky: Where you can say, okay, the oncologist does the treatment directed part of it, and the palliative care doctor does the symptom management part. When the treatment, the medical treatment is in a sense already somewhat palliative care how do you delineate that? So I think that’s a hard thing to figure out and say where are the boundaries going to be? And who manages what? Whose job is it to titrate the diuretics? What are the specific things that the hepatologist is not currently doing that a palliative care specialist could add? But then I think the other issue that we already touched on is how do you open the door for discussions of if things don’t go well, or if you don’t get a transplant, or if you get sicker and don’t want to continue doing the most aggressive therapies that you have, who’s the best person to do that?
Ricky: The hepatologist that has an ongoing relationship with the person, or a different specialist that can create a safer, different space to have those discussions that maybe the patient doesn’t feel comfortable talking with their hepatologist about? So I think just as Jen answered for hers, I think it’s really an open question of is a primary palliative care model going to be more effective and more scalable and more doable, or does specialist palliative care really add something distinctive? And as a researcher, I think the short answer is we need to study it to figure it out.
Arpan: I feel like a lot of this also depends on your practice setting. I’m at UCLA in the VA and we have very different looking teams for hepatology and palliative care, but I do think that this is an opportunity to have… Me and Nneka have talked about this all the time and I talk with my mentor and Anne Walling about this, having a shared mental model really helps. Just getting the palliative care team, getting the hepatologist and their teams in the room, discussing what needs to be done on the patients, what you can do, what I can do, what are the common things that we need to accomplish, and then developing a pathway based on that.
Arpan: And I feel that a lot of the conversations I’ve had with hepatologists, they’ve had these preconception, pre-misperceptions about palliative care. A lot of it, it has to do with the fact that they’ve just never been in a room and talked to each other about this, and so I think that just introducing those structured communication between teams might be a way of actually solving it at different medical centers, depending on what their needs of resources are.
Nneka: I completely agree with what everyone has said, but especially what Arpan just said. I think that as we think about ways to improve and support our patients more developing connections with supportive care services be that specialty palliative care, geriatrics, social work, which I think it’s a huge area of need for our patients as well as mental health services will be important. And I think one of the things that I’ve noticed in the short time that I’ve been in this field as an early career investigator, as someone who just started as faculty in September is that hepatologists are really down for the cause. In terms of thinking about how to incorporate, or support, or integrate geriatric and palliative care principles into the care of our patients. What I have noticed more of is that I’m not so sure how much exposure other supportive care fields have had to our patient population, and I think that that is a huge area of need for us to develop some bidirectional education, collaboration so that we can build interventions and programs to better support these patients.
Eric: Nneka, you mentioned earlier one out of two people at two years with TCOM to heart failure are dead, what’s access to hospice look like speaking of interdisciplinary supportive programs?
Nneka: Access to hospice is very, very limited for our patients. In some work that Arpan and I have done, the vast majority of our patients are not able to get access to hospice at end of life. But I think the hospice question and this is what I’ve realized in doing this research, before making presumptions about what really truly defines high quality end of life care for our population, we have to also think about what they need at the end of life to support them and their caregivers. To actually have an experience that supports their values, supports the process that they are expecting at the end of life. So our patients with cirrhosis can die from variceal bleeding, they can die from respiratory failure, they can have deaths that can be very, very difficult to manage at end of life.
Nneka: A lot of our patients and their caregivers are socially disadvantaged, a number of our caregivers suffer from significant burden in taking care of their loved one and feeling like they’ve had minimal support throughout the course of their loved one’s diagnosis. And so the presumption that a death at hospice would be a death that would really provide them high quality end of life care is still a presumption. And for a number of patients and caregivers, it might be possible that they would prefer to die in the hospital if they were aware of the ways in which they could pass, so that they would have a lot of adequate support, so that their caregiver is not overburdened with the process of their loved one dying.
Eric: I know we’re running out of time, I’m hoping for some quick lightning round answers to some of the questions I have because oftentimes the patients that I care for are not being followed by transplant hepatologists, or a hepatologist, or anybody with expertise, it’s folks like me. So I’d love just some really common just thoughts on symptom management as people are approaching the end of life, in particular hepatic encephalopathy. Our go to usually is A, I don’t think it’s diagnosed frequent except when it gets really bad, but our go to is lactulose thoughts on managing hepatic encephalopathy. Again, we’re not in the transplant phase anymore, we’re now farther down on the illness, folks like me are caring for them, any tips?
Arpan: Add rifaximin, lactulose is very burdensome from a symptomatic standpoint. I think it’s really important to understand what the goals of therapy are as well, because to some degree you won’t be able to really maximize cognition and then using that as an opportunity to identify surrogate decision makers. I don’t think we do that enough in hepatology at least, an Anne Walling also says, this is like when you have NG tube and a patient with encephalopathy, that is like an end of life discussion when you’re thinking about life sustaining treatment. So just framing it and knowing that that is you’re moving towards that when that starts to happen.
Jen: But for the outpatients, Xifaxan 550 twice a day, and then I also say yogurt, yogurt with probiotics twice a day.
Eric: Yogurt with Probiotics.
Jen: With the probiotics. This is small study stuff, but yogurt is really good for them with the probiotics.
Ricky: I’ll say as the person with the least especially knowledge of liver disease, making sure that the patient understands what their medication does and what is intended to manage their encephalopathy can be helpful. I’ve seen patients who have had a lot of issues with adherence that have stemmed from that earlier discussion we were having of just not understanding their liver disease well enough to know what the lactulose is trying to do, and it’s all they understand is it makes them go to the bathroom too much and they don’t like that. And so making sure the patient understands which pill is for what problem can be something that’s easy to overlook.
Eric: And Ricky, what are your thoughts about pain management in this population? Any particular?
Ricky: I mean, I don’t have anything good to say other than it’s really difficult. And then especially if transplant is on the table, because then you want to be very cautious about opioids and any issues that those can cause. So I think my one tip would be close communication with the patient’s hepatologist to help figure out what modalities are on or off the table as far as that’s concerned, and then work within those constraints.
Eric: Our transfer hepatologist out there, your thoughts?
Jen: Tylenol no more than 2000 milligrams a day. And then you need a whole GeriPal Podcast on this idea that transplant patient shouldn’t use opioids, it’s very complicated.
Eric: Yeah. I see a lot of use of Tramadol which makes me wince.
Alex: Trama don’t. [laughter]
Nneka: Trama don’t.
Ricky: Trama don’t, yeah.
Eric: Trama don’t. And last one from I see a lot of itching too in this population, any thoughts on, any particular tips there anybody?
Arpan: So a lot of times it’s just actually making sure the skin is moist is one thing, antihistamines can cause sedation so that’s something you should be worried about. Actually the use of sertraline and naltrexone can be effective for pruritus as well as cholestyramine.
Arpan: I usually start with cholestyramine unless the patients take a ton of medications for absorption, but a lot of times I actually end up using to be honest sertraline. And if they don’t have any contraindications to opioid use consider naltrexone, but starting with honestly just addressing the dry skin can actually help quite a bit.
Eric: And I said that was my last one, but it’s not the last one, one more, ascites management near the end of life. Another really common one people with descend bellies that are causing you some pain, how best should we manage this?
Jen: Peritoneal drain. This might be controversial, but I think we haven’t used that enough for our patients and we’ve been so afraid of infection, but in reality it’s so great for patients control.
Jen: And be able to be at home, and for their caregivers not to have to take them back and forth for a paracentesis. I am a huge supporter of a peritoneal drain.
Nneka: I completely agree, and there’s actually a research group out of the UK that came out with a study called The REDUCED Trial, in which they did a pilot trial of the placement of long term abdominal drains for patients with refractory ascites. And qualitative interviews with patients and caregivers showed that they were really, really appreciative of having that drain be placed because it reduced their need to interface with the healthcare system so often. And patients also anecdotally stated that it improved their satiety, that it improved how they felt overall, and so I think that… And important because I think this is the big concern and Jen raised this up, from a hepatologist perspective importantly that study showed that there were very low rates of infection compared to patients getting a serial large volume paracentesis. So I think that we need to be more open to considering long term abdominal drains for our patients who are really terminal.
Eric: Well, I want to thank all of you, but before we leave Alex I think you got more of the song.
Eric: Awesome. Thank you Alex. Thank you Nneka, Jen, Ricky and Arpan, that was a wonderful discussion. Man, I could have asked another hour worth of questions that I have about end-stage liver disease, so a very big thank you for joining us today.
Alex: Thank you so much. We’ll have to have another.
Jen: I’d love to join again. Thanks so much.
Ricky: Thank you so much.
Jen: We will have links to all of the papers we cited, and the website. What was the website again?
Eric: Cirrhosiscare.ca. But wait ca is Canada, it’s Canadian?
Eric: Well again, big thank you and thank you Archstone Foundation for your continued support and to all of our listeners.