Palliative Care in Liver Disease: A Podcast with Kirsten Engel, Sarah Gillespie-Heyman, Brittany Waterman, & Amy Johnson

Eric 00:09

Welcome to the GeriPal podcast. This is Eric Widera.

Alex 00:12

This is Alex Smith.

Eric 00:13

And, Alex, who do we have with us today?

Alex 00:15

We have a full house today, Eric. We have Kirsten Engel, who is an emergency medicine and palliative care doc at MGH. Kirsten, welcome to the GeriPal podcast.

Kirsten 00:25

Thank you so much. I’m thrilled to be here.

Alex 00:27

And we have Sarah Gillespie-Heyman, who is a Palliative Care APRN at the West Haven, VA in Connecticut. Sarah, welcome to the GeriPal podcast.

Sarah 00:37

Thank you.

Alex 00:38

And we have Brittany Waterman, who’s a palliative care doc at the Ohio State University. Brittany, welcome to the Geripal podcast.

Brittany 00:46

Thank you. Pleasure to be here.

Alex 00:47

And we have Amy Johnson, who’s a palliative care doc at Indiana University. Welcome to GeriPal.

Amy 00:53

Thanks for having me. Excited to be here.

Eric 00:56

So, we just had a podcast not too long ago on KidneyPal. KidneyPal? RenalPal?

Alex 01:02

I don’t remember what we called it, something like that.

Eric 01:04

I think it was KidneyPal.

Alex 01:05

KidneyPal.

Eric 01:05

Now we’re doing what? LiverPal?

Alex 01:07

LiverPal.

Eric 01:08

So we’re going to be talking about liver disease and palliative care. But before we jump into this topic, we always ask for a song request. Who has a song request for Alex? Is it Sarah?

Sarah 01:21

It is Sarah.

Eric 01:22

Sarah, what’s the song?

Sarah 01:24

It is Save Me by Jelly Roll.

Eric 01:27

Save me by Jelly Roll. Why save me by Jelly Roll?

Sarah 01:30

Well, if you listen to some of the lyrics and know Jelly Roll’s story, he had a lot of addiction issues and specifically alcoholic as well. And he actually was able to get through that with a lot of help from different people. And so I thought it was appropriate. We’re talking about liver. We’re talking about change. And, you know, I just thought it was a really special song.

Alex 01:55

Yeah, great choice. I had a lot of fun with this. Here’s a bit of it.

Alex 02:17

(singing)

Eric 03:40

Very nice, Alex.

Alex 03:41

The song’s too fun. I couldn’t resist doing the longer version.

Eric 03:48

I always tell Alex, keep the first one short. Yeah, we will do more of that.

Alex 03:53

I couldn’t stop it.

Eric 03:57

Okay, let’s jump into the topic. LiverPal. LiverPal? LiverPal.

Brittany 04:02

Is that what we’re calling LiverPal?

Eric 04:03

Yeah, LiverPal. I’m going to start off with Kirsten. Why did you get interested in LiverPal? Emergency medicine, right?

Kirsten 04:12

Yes.

Eric 04:12

Palliative care. What’s the connection and why?

Kirsten 04:16

So, in emergency medicine, obviously, we are interacting and caring for these both exciting and interesting, but also very complex and humbling patients to care for in the ED setting. And that piqued my interest. But really, the opportunity that led to it all was coming to MGH and meeting Nneka Ufere, where I had the opportunity to join the LiverPal group there. And that has been an incredible opportunity.

Eric 04:42

So is that an actual service?

Kirsten 04:45

So it’s actually not a service. We’re actually, at this point, really a study. So we’re a study group.

Eric 04:50

Okay. And what are you studying in particular?

Kirsten 04:52

So we did a pilot study and of nine patients, and now we’re in the process of doing an RCT of 200.

Eric 05:00

So RCT of palliative care in liver disease.

Kirsten 05:04

Exactly.

Eric 05:05

Oh, wow. When do we expect the results of that study to come out? When do we have you back on the podcast?

Kirsten 05:11

Two and a half years.

Eric 05:12

Two and a half years.

Kirsten 05:13

We’re about six months in.

Eric 05:15

We’re going to put that down. I just would love to hear each of the other of our guests. Sarah, from your perspective, how did you get interested in LiverPal and what are you doing?

Sarah 05:26

So here at the VA, we’re actually pretty lucky, or I’m lucky. I work with two amazing hepatologists who actually reached out to me about seven years ago and said, you know, we need help with our liver patients when they are in a state of decline and when they really need extra support. Can you come and be in our clinic once a week? So, seven years ago to now, I’m in their clinic once a week, sometimes twice, seeing patients with them and sometimes individually, and sharing that, you know, that common goal to support them and their families, and I think providing some expertise from the palliative symptom management side of things and being able to jointly work together to help the patient and the family from two very different perspectives, but nonetheless, coming together with that common goal, what does.

Eric 06:20

Your team look like, is it just you from the palliative care perspective?

Sarah 06:23

It’s just me. It’s me from the palliative care team. It used to also be a social worker and myself who would actually go to clinic and spend some time up there. Said social worker has left since then, so it’s now just me. But we’re hiring somebody else, so I’m kind of hoping I can shift their interests to include liver and be able to join our hepatology folks upstairs in their clinic together.

Alex 06:50

So you’re an embedded model.

Kirsten 06:52

Yes.

Alex 06:53

And Kirsten, was yours an embedded model as well.

Kirsten 06:56

So we are all inpatient.

Alex 06:58

All inpatient. So inpatient and embedded outpatient. Okay, got it.

Eric 07:02

And real quick, Sarah, who do you see?

Sarah 07:04

So in terms of, like, the type of patients? Yeah.

Eric 07:08

Which of the patients that you think you’re helpful for, you want referrals?

Sarah 07:12

It’s mostly our decompensated cirrhosis patients. So folks that are having refractory ascites or refractory encephalopathies, challenging emotional symptom management as well. We get a bit of, in the veteran population, kind of a mix of a lot of mental health issues thrown into these comorbid illnesses, including cirrhosis, but it’s usually the decompensated cirrhotics or the folks with liver cancer and cirrhosis, or one of both. And it’s usually those people that I’m seeing. I see them both inpatient and outpatient. So if one of my patients gets admitted, I also see them on the inpatient side of our hospital. So I go between.

Alex 07:56

Mm hmm.

Eric 07:57

Great. Okay, I’m gonna move on because I want to hear from each of you. Brittany, what are you doing?

Brittany 08:04

Well, I actually wanted to be a hepatologist way back when I was a little girl. No, I thought I was going to be a hepatologist. I stood up at my intern orientation and said, I’m doing liver. And then I realized in about four weeks, I don’t like procedures, and I don’t like emergencies. So gastroenterology was kind of out, but I was very drawn to that patient population, and where I did my training had a very robust, integrated palliative group. And so that interest kind of carried forward as my career developed. And so as soon as I started my fellowship, I got connected with one of the hepatologists, who is one of my main collaborators here at Ohio state.

And I’ve been so lucky to work with a lot of hepatologists who have that palliative mindset. So it’s been kind of a two way street as we’ve worked to change the way that we practice. We mostly see patients on the inpatient setting. I’m an inpatient only doc, and the way that our outpatient inpatient is structured, really, our outpatient is for cancer patients. So we do see the occasional hepatocellular carcinoma patient, but predominantly we’re seeing patients on the inpatient side, but have been doing some decompensated cirrhosis patients. Yes, we actually, we did a study looking at kind of our inpatient palliative. Who do we see? We’re working on really describing our practice, and then using that to hopefully develop new models and change the way that we are taking care of these patients, improving it, moving forward.

Eric 09:31

Great. All right, Amy, how’d you get interested in this, and what does it look like for you?

Amy 09:36

Sure. When I was a third year resident, I knew I was going into palliative medicine after my chief year, and I had several patients with decompensated cirrhosis who we had absolutely no literature on how to help these humans from a palliative care perspective and sort of make life better. And so I was driven by the fact that I needed more information, and so it sort of became my clinical focus as well as I dabble in the research. And so they’re just fascinating as an internist, just to study the liver. We have both inpatient and outpatient at IU. I started our liver embedded liver clinic about seven and a half years ago.

We’re the only transplant center in Indiana, so I’m sitting in the workroom with the hepatologist, and thankfully I trained here, so they knew me from before, and we had some research projects, and it all just beautifully came together. So we see folks inpatient as well, and I would say at least 50% of our census every week as a patient with decompensated liver disease. But we see folks pre transplant, not a candidate for transplant. I’ve seen patients post transplant when they start having complications. I keep my clinic patients after they’ve transplanted, usually for about six to twelve months to help with that transition. So I’ve had a couple dozen folks transplant, so it’s been really awesome to, to watch that process.

Eric 11:05

So is there a trigger or what’s your referral criteria for the outpatient clinic?

Amy 11:13

So outpatient clinic, whoever they send me, especially when I was trying to build the clinic, I was like, send me anyone. So I was initially getting a lot of post transplant symptom stuff. We’ve become extremely busy with pre transplant folks, so we’ve narrowed down more to our decompensated patients, our patients with over cancer, both pre and both going for transplant. Transplant and not going for transplant because they’re all very miserable. And thankfully, my hepatology colleagues and our surgeons trust that I’m not going to veer the plan at any point and just really there to help get the folks through to transplant.

Alex 11:50

So that is a key topic that we will put a pin in we have to get back to. Right?

Brittany 11:56

Yeah.

Eric 11:57

You know, I guess one question is, so you all kind of have this kind of, I would say, specialty around liver and palliative care. How different is it than our usual. I’m not even sure if there’s a bread and butter one, because we’ve just done kidney pal. Like, each organ now has a pal associated with it, maybe each disease. How unique is this patient population from a palliative care perspective?

Amy 12:23

I find this one. And honestly, a lot of my colleagues are like, Amy, please take your liver patients. They are complicated. They’re complicated from a symptom standpoint. Every medicine goes through the liver, so everyone’s like, what can we give them? What’s the goal? They’re confused a lot of the time, and so we’re doing a ton of caregiver support. And so I honestly think it has to do with how complex the diseases and the complications that come from it. And you’re working with a patient that almost is like a dementia patient, depending on how much lactulose they’ve been taking. And so just navigating all of those symptoms and then trying to gently work them towards, like, anything bad could happen, really, at any time. Like, with a cancer diagnosis, there’s relatively a smooth, smooth prognosis.

We know what’s going to happen. Whereas liver patients can be fine one day and not fine the next day after a variceal bleed or an infection. And so they’re just. They’re a very high maintenance, for lack of a better word, population that we’re constantly triaging symptoms, sending them to the emergency. And so it’s just. There’s just a whole different level. And there happens to also be a component in a lot of these folks with substance use disorder, which then adds a whole new sort of thing on top of that. And so there’s just a lot of pieces to these folks.

Sarah 13:48

I think it’s the unpredictability. It’s like what you were just saying, Amy. It’s like, you know, we have this graph where we can show the trajectory of, like, you know, a cancer patient, dementia versus, like the other, you know, heart failure and pulmonary and liver. And there really is. There’s very little predictability of when we think they’ll be admitted, when they’ll be discharged, will they die in this admission? You know, they’re in the ICU, sick as a dog, and somehow they get through, or maybe they don’t. I think for families and for other providers who are not trained in that, it’s very hard to predict. I find for me, that’s one of the biggest challenges in this population, but also one of the reasons I love it the most.

Kirsten 14:30

Totally agree, Sarah.

Amy 14:32

Exactly.

Kirsten 14:33

That’s one of the things that draws you to it, right? Is that, and we try to use, often use the term prognostic humility, that unlike more than any other diagnosis, really, we truly need to be humble, right. Because, and I think as palliative care providers, we walk around pretty humble, recognizing that there are many things that we cannot predict. And there’s uncertainty in all different types of diseases. But I think for Liverpool, it’s not only the uncertainty, right. That we can’t predict when they’re gonna get sick or when they might go to the ED, when that big event may occur, but it’s also the uncertainty of who might be able to get transplanted.

Brittany 15:07

Right.

Kirsten 15:07

And I know we’re gonna get to that, but you need to get pretty sick to get a transplant to even have the possibility. And yet, if you get too sick, then you can’t be transplanted. And I think, to me, that part is the part of many parts that everyone just has named, but that part in particular is the part that really sets this apart. You don’t get sick enough to have more chemo.

Brittany 15:30

Yeah.

Kirsten 15:31

If you get sick enough, you can have a transplant. Right.

Brittany 15:35

But not too sick.

Kirsten 15:36

But not too sick. Exactly. Exactly.

Eric 15:39

The Goldilocks phenomenon right now.

Amy 15:40

That’s right.

Brittany 15:41

Hey, that was the name of our talk two years ago.

Eric 15:46

Well, let me ask, then, how do you think about uncertainty and prognosis in this population? Because they do have an end stage organ disease with decompensated cirrhosis. You kind of do know prognosis. You know it’s going to continue to get worse. You kind of do know if. If you trust stats on transplant that they’re probably not going to get one, but they might. And I think, how do you incorporate things like meld score scores?

Brittany 16:16

And it’s so hard. I’m lucky in my clinical work. I’m embedded in the ICU in one of our smaller hospitals. And I see this in practice, done not as successfully where folks are using the meld score. As this patient has an x percent mortality in three months, there’s a little more nuance to it, and it isn’t really applied to the individual. And I think what makes this even more challenging, and you really have to practice the hope and worry at the same time and holding both of those truths, because for any one person that you’re like, oh, yeah, that person is not going to live through the night.

They’re the ones who miraculously make it through, and they’re young enough and otherwise well enough that they can walk that path. And the flip side, you have someone who’s relatively stable, who doesn’t make through the night because of a catastrophic bleed. I think one of the challenges, especially about liver, is it doesn’t have a dialysis, it doesn’t have an ecMo, it doesn’t have a ventilator. And so there’s that additional layer of you’re kind of on a tightrope, and you can’t really tell looking at any one person when that final hepatocyte is just going to die versus which ones are just sleeping, to put a really broad explanation of it.

Eric 17:28

Yeah. I think one of the challenges, though, is that you can get stuck in this uncertainty loop and spiral, and everything is unsure. But there are some patients who have decompensated cirrhosis who don’t know yet that their liver’s not going to get magically, it’s never going to be 100% again. And how do you balance? Like, talking about prognosis, using these things like meld scores, I’d love to hear how you actually use them. But also acknowledging that uncertainty, I think.

Amy 17:57

It all goes back to their goals and sort of what their goals are and what they’re hopeful for. I spend most of my first visits in clinic, about 30 to 40 minutes, explaining liver failure and what it means, and that all of the symptoms they’re having pretty much can be blamed on the liver and sort of doing a ton of education.

And just like Brittany said, we hope and plan one way, but we’re also making sure that we’re planning in case things don’t go the way that we want to. I see these patients pretty frequently to kind of remind them of where we’re going and just checking in. You still want to go to the hospital if you get sick? I tend to have a lot of honest conversations, like, yes, transplant’s on the table, but I suspect it’s not going to happen. So let’s have a plan for that. So I’m pretty bold. I understand our transplant process really well. And because I’ve been doing it for seven years, I can say with pretty good certainty this probably isn’t going to work, but we will still move forward. I will support you. But I’m pretty honest with folks when it comes to I don’t think there’s enough time to get you to a transplant or enough time for three to six months of sobriety. And how do you want to spend that time? And if that’s in the ICU trying to fight for that transplant, then I’m right beside them and I’ll come and see them upstairs when they get admitted.

And if they want to be home or they call last minute, they’re like, we just want to be comfortable and not go back to the hospital. And so it’s just a lot of repetitive conversations about their goals with as much education on what this looks like. And honestly, a lot of this is for the caregiver because the patient half the time is like, who knows what their ammonia is? The day they show up to clinic, they hold their lactulose because they don’t want to have issues on the way to clinic. So a lot of this with their caregivers, and if they don’t have a caregiver, that’s a whole different ballgame.

Alex 19:44

Do you worry about saying different things than the transplant surgeon or the transplant hepatologist?

Sarah 19:52

I was just going to ask Amy about that, actually, because I don’t work directly with the transplant folks. I work with a lot of hepatologists.

Amy 19:58

But I thankfully have done this enough and have their trust and understanding to speak freely. I will always give the caveat, things can change, right? So it’s like, prognosis, hey, you probably have, you know, weeks to months, but maybe it’s, you know, tomorrow. Okay. Oops, I was wrong. But a lot of times it’s. I’ve already looked through their case. I’ve looked through, I’ve talked to their hepatologist. If it’s something that’s like, back and forth, but, you know, sometimes I’m surprised they’ll transplant someone that I’m like, this maybe isn’t a good idea. Post transplant, they figure out it was not a good idea.

But I just, you know, I work with them so intrinsically with research and just on the wards, and that I feel pretty comfortable doing that. And they typically support me, but I leave enough room for error and that let’s keep hoping anyway, if that’s truly what the patient wants. Most of the time they thank me for sort of being able to kind of make that recommendation that, like, we’re not going there.

Alex 20:59

When I’m teaching about family meetings to learners, I say the pre meeting is as important and often more important than the meeting itself, because that’s where you get all the providers together and you agree on the prognosis so that you’re not arguing about it in the room or giving very different ideas in the room with the family. I could imagine that could lead to conflict.

And because trust is such an important element of this relationship with the hepatologist, the whole transplant team, it’s important to be on that same page. I just want to open up and see if anybody else has thoughts about that.

Kirsten 21:38

Brittany commented before about holding hope and worry at the same time, and those hepatologists and the transplant hepatologists in particular are holding both of those things. Of course, their focus is a lot on am I going to be able to do this potentially life saving intervention with this surgery and this transplant? But they’ve got that worry there, too, of course. And so I think that sometimes just opening up and enabling someone to have a conversation.

Right. That’s the role we can play with providers. And recognizing that we’re holding both. And sometimes the most supportive way, the best way we can be supportive for those providers is to recognize that we’re doing both. We’re holding both for those patients, and that is a relief not only for them in thinking about their patient, but a relief for them themselves, and allows them to open up and talk.

Brittany 22:27

I was going to say…so part of the excellent opportunity I’ve had is I’ve sat on our transplant patient selection committee for six plus years now as a palliative representative and have been able to kind of give some real time feedback. And those hopes and worries on the team side are there. And sometimes the biggest intervention, like you said, Kirsten, is just giving that space because they have a lot of worries, too. They want to give this to anyone and everyone they can, at the same time recognizing it’s a finite resource.

There’s a lot that goes into a transplant beyond kind of at the patient level, and so wanting to make sure that everything they’re doing is what’s right for that patient, but what’s right for kind of their ability to do it for future patients as well. And so I think it goes beyond just kind of the palliative patient caregiver triangle, and it’s the palliative patient caregiver team square, so to speak. And I love hearing Amy’s experience, and I think the theme of trust has come up so much, and I think that’s another thing that’s not necessarily specific to liver, but very much is at the front and center of liver, because we are in this kind of new realm of how palliative is being delivered to this type of patient population. Building that trust, building that esteem between the different groups, is so essential in continuing to provide that care, and I think has been something that I’ve seen adapt and change and grow over the last seven years that I’ve been doing this.

Eric 24:03

And can I ask how you think, given the uncertainty around potentially prognosis, given that there is this goldilocks phenomenon of you got to be sick, but not too sick to get the transplant, how do you think about advance care planning for those individuals?

Sarah 24:19

Well, I don’t know.

Amy 24:21

For me, I always.

Eric 24:21

Is it any different than other diseases?

Sarah 24:24

See, I usually always present it as these are things we should think of. No matter where you’re at in your illness, and the fact that you can perhaps, or your family in some cases, can talk to me directly and tell me what you want in a setting that is not emergency room, not ICU, for me, that’s the ideal, but I kind of do it as a. This is a normal thing we need to talk about and not present it as something, oh, because of how sick you are, we’re going to talk about this, really try to normalize it. I don’t know what others think.

Amy 25:02

Everyone needs a healthcare representative in this patient population, someone who can speak for them when they become encephalopathic. Like, it’s not an if, right? The majority of these folks have some sort of encephalopathic event, so making sure that they have a person and that person knows their wishes. So I tend not to fill out a ton of other types of paperwork, especially if they’re moving towards transplant. That generally means that they’re wanting full interventions. I do have patients who say, if I get too beyond sick, so I just say, if we get beyond sick and transplant’s not an option, what would be your wishes? And I document those differently in my notes, and we have a goals of care template within our EMR that then I’ll document if transplants off the table, these are their wishes, and so I sort of have a contingency plan, but at minimum, everybody, everybody needs a healthcare representative who knows the patient’s wishes.

Sarah 25:57

And that’s so hard in my population, the veteran population, forget about it. Like, half the people don’t, you know, they’re estranged, they’ve cut them out of their life, or they. They just don’t have anyone. I actually have a gentleman right now where the nurse is like, well, isn’t there anyone? And I’m like, no, he has no one. And push come to shove, if he’s admitted, it, will be chief of staff. And that is how, you know, things get decided. If he has no capacity. But that’s something very common, unfortunately for me, is having to have that conversation, knowing they have no surrogate. And I will document everything they express to me in a obviously non encephalopathic state. But it becomes very tricky.

Eric 26:42

How do you talk to people around code status if you talk to them about code stats? Because. Right. If you’re DNR, does that mean that you can’t be on the transplant list?

Brittany 26:51

I don’t think there’s any rules about it. I think it’s more a. A. More than a law. I do think that it’s more representative and every state’s different with what their code status designations are. But, I mean, the overwhelming assumption is if you are pursuing transplant, then you are pursuing everything that that entails. Now, that is, I think, more of the entrance to a conversation. And I love the idea of having kind of contingency goals of, you know, if this, then this. But I think nearly across the board in my practice, if somebody’s still being actively considered for transplantation, they are full code. And if that starts to become a question, then that opens up the conversation of, does it make sense for us to continue to pursue this? It may be a misunderstanding. It may be a, hey, no, I don’t want to do this anymore. And it’s more of that entrance into the larger conversation.

Kirsten 27:43

And I think the important way to pull these two things together that have just been said, which are incredibly important, is you’ve got the caregiver and how important it is for everyone to have a healthcare proxy identified and to have a caregiver who you are interacting with as a provider and knowing that that person knows what that person. What the patient’s wishes are. Right. So pulling those two things together, of course, code status can and should be discussed in a contingency kind of fashion that Amy and Brittany both commented on. Most important is that that isn’t just a conversation with that patient. Right. But that is a conversation where the caregiver slash healthcare proxy is involved, because that is the place these people can be completely lucid and have a full conversation with us and make us completely clear about what their wishes are. But the moment that they become encephalopathic, it’s gone, and we need that caregiver.

Eric 28:34

I’d love to, if it’s okay, switch to these really common symptoms around LiverPal and how you think about it, potentially differently, especially because the liver is so involved and, like, metabolism of medications. How you think about that. So I’m gonna start off with pain, which pain meds, and how to treat pain in liver disease seems really complicated. Any particular thoughts on how to manage pain and liver disease from a pharmacological perspective?

Sarah 29:08

I think it depends what the pain is, right? I mean, is it. Are they describing it as muscle related pain? Are they describing it as feeling distended, feeling full, like a stretching pain?

Eric 29:24

I’m gonna be specific because you’re asking. Okay. Now they’re complaining about one really common symptom. Okay. The pain is this cramp that I keep on getting in my legs over and over again, especially at night.

Amy 29:36

Yeah, cramping is really common. I typically try to use medications like baclofen, and very small doses of gabapentin. Seems to be okay in this population. I will use an opioid if the cramping becomes debilitating, where they can’t get any sleep whatsoever. And so I start low, go slow. I don’t really avoid any particular medications, maybe except for methadone. Otherwise, I just sort of go. In the hierarchy of potency, I have found the most successful opioid is actually hydromorphone. It tends to be the most successful agent, which, in the lieu of the current national backorder, has made some very unhappy patients that I’ve had to switch off of it in the clinic settings. But I would say oral hydromorphone is probably my go to opioid.

Eric 30:34

And you avoid methadone just because of all the metabolism issues, just how long.

Amy 30:38

It stays in the system, and if they become encephalopathic. So the only folks that I would have on it would be someone with a substance use disorder that I’ve taken over their methadone prescribing and use it for pain instead of their substance use disorder. Otherwise, it’s usually not an agent that’s on my radar for that.

Eric 30:55

Anybody else have a preferred opioid, or thinking about the hierarchy of opioids and.

Brittany 30:59

Liver disease from an inpatient perspective? I agree wholeheartedly or low dose? I mean, I’m talking half a tablet 1 mg po hydromorphone I, again, do a lot of work in ICU, so I really push teams toward bolus doses of IVF, start low, go slow, avoiding drips if at all possible. Again, for those same reasons of avoiding the methadone is you’re going to get a much longer duration of action as folks lose that metabolic ability of the liver. But really try to do as low dose as possible, monitoring for side effects and symptoms. And also, at the same time, empowering teams that treating painful conditions is important. And avoiding Tramadol. The reason that 50 of Tramadol twice a day doesn’t work is because it’s a pro drug and you need a working liver for it to actually impart an effect.

Eric 31:55

Same thing with shout out to all.

Brittany 31:56

My pharmacists, any of those. So, yes, I think that’s one of the biggest things. Is that empowerment and not being afraid of Tylenol, too? Excuse me, I see the men.

Sarah 32:06

I was just going to say that, Brittany. Yeah. The Tylenol, especially in the outpatient setting, I can’t believe how many patients are like, I can’t take that. I can’t take that. And I’m like, actually, you can take up to 2 grams a day and it is safe. And if you’re not actively drinking. But, you know, I do think there’s that hesitancy with patients. And if they’re very hesitant liver disease.

Eric 32:28

You’Ll still think about Tylenol, 2 grams.

Brittany 32:31

More so than an NSAID. You know, if you have to pick.

Eric 32:34

One of the two, completely out of the question.

Brittany 32:38

I’ve never seen a hepatologist say it was okay.

Amy 32:40

So, no, that goes for post transplant, too. I learned recently they will NSAIDs out. NSAIDs pretty much are nods. Topical NSAIDs are.

Sarah 32:50

Those are okay.

Kirsten 32:51

And I think that the other thing to emphasize amidst all these really, you know, important pharmacologic discussions is just the non pharmacologic discussions around and the options.

Amy 33:00

Right.

Kirsten 33:00

So one is just really, really listening. And I know we do that as part of our everyday in palliative medicine, but just really, really listening to their description of pain. Many of these patients haven’t had the chance to share what they’re experiencing because there’s been so much focus on so many other things going on in their bodies. So listening to whatever their symptoms may be and then sometimes even non invasive things like, you know, heat and cold and massage, and I’ve been blown away the number of times those kinds of things can really, really help. And, you know, even you know, local injections to address discomfort. You know, there are times when those kinds of things can be really unhelpful. So I think it’s important to think about what we can do that isn’t perhaps pills that they’re putting in their body too great.

Eric 33:48

Any concerns with the patches, like abutrans or fentanyl patches, given that, you know.

Brittany 33:53

It’S the long acting, it’s the long. You’re probably okay with the Butrans. I don’t know. I mean, if you can get it and pay for it, I think I prefer just personally, and I’m a nervous Nellie when it comes to prescribing anyway, is I have much more control over a short acting than I do with a patch. We’ve had so much trouble getting Butrans patches, even for patients with cancer. And so I don’t think we even really tried with our hepatology patients.

Eric 34:23

Yeah, I just learned challenges of when discharging people to hospice on. Butrans is a lot of hospices don’t even have it on their formula.

Brittany 34:29

So expensive.

Sarah 34:30

Yeah, I think that’s the advantage of the VA. Unfortunately, we gotta.

Alex 34:36

Can I ask about Gabapentin before we move on? When you said low dose Amy Gabapentin, what do you. What do you mean by that?

Amy 34:42

I usually start at 100 at bedtime, and if they’re more confused the next day, it’s gotta go. I have some folks who just simply cannot tolerate that medication. I love it because it also helps sometimes with alcohol cravings. It helps with cramping, it helps with anxiety. But a lot of folks don’t seem to tolerate it. I would say the highest dose I’ve ever seen a patient with liver disease on is about 600. And that was like, wow. Most of the time, 100, 301 to three times a day would be dosing, if we can even tolerate it.

Eric 35:16

That’s fascinating because it’s actually not metabolized at all by the liver.

Amy 35:20

They just get so confused between the ammonia and the gabapentin, there is something that just goes horribly wrong.

Eric 35:27

Okay, let’s talk about ammonia and hepatic encephalopathy. Before we talk about your go to treatments for it, do you even check ammonia? Like, what’s the role? Because ammonia can change a lot. A lot of things may increase pneumonia for our listeners.

Alex 35:42

All of our guests are shaking their head, no.

Sarah 35:44

I’m like, we don’t rely on pneumonia.

Alex 35:46

No.

Eric 35:46

All right, so let’s take a moment. How do you think about, especially when the more decomposing cirrhosis if you’re ever managing people, like, in a hospice, the role of, like, the different. I guess the big one is lactulose. That’s out there. What’s your target?

Sarah 36:04

Well, mine is always three to four bms a day. Me.

Brittany 36:08

But.

Sarah 36:09

But I do have to say. You mentioned hospice, though. I think if someone’s on hospice and we’re not thinking their life expectancy is very long, we also have to consider, by giving them things like lactulose, we are going to make them have increased stooling. This could be uncomfortable for them, especially if they’re incontinent. And I think it’s something to consider that at some point, we talked to caregivers families about perhaps not focusing on the encephalopathy. If it causes agitation and there is, you know, scary hallucinations or things that are nightmares, waking them up, causing lots of disturbances, we can consider other medications to help with those, but I don’t know, at that point, I do have that open discussion with families that we don’t have to focus, that they have three, you know, if they’re dying, that that’s not the focus.

Kirsten 37:06

And then just to say if they hate lactolis, you can use other things that we’re more used to.

Eric 37:10

Like what?

Kirsten 37:10

Say quickly.

Sarah 37:11

I mean, the typical miralax. Miralax is.

Kirsten 37:15

Yeah, you don’t have to use lactose. I think a lot of people think, oh, my goodness, liver disease. You have to use lactose. You can talk to them just like we do all of our other patients. You know, which ones do you like better? Let’s use that one. As long as we’re getting you to have a bowel movement.

Eric 37:26

So is the only thing the way that lactulose works, is it just the bowel movement, or is there something about, like, acidification of the cold? Like, it doesn’t matter?

Amy 37:35

There’s a little bit. There’s a little bit of science behind why we use lactulose and absorbs and how it comes out, but it’s just more important that we’re getting the ammonia out somehow. And so there’s lactulose, obviously, any stool agents, but then there’s rifaximin, which if you can get over the prior authorization process, you can get that for them. We also use zinc quite a bit at our institution.

Brittany 37:58

Zinc.

Amy 37:59

Oral zinc.

Brittany 38:00

Yep.

Alex 38:01

And oral zinc is a laxative, or does that work?

Amy 38:05

It just helps with the ammonia. It’s usually 220, and we use that. So there’s a long list of different things, but zinc is one of our hepatologists favorite, so I make sure every patient’s on all three of them.

Eric 38:18

The biggest issue is that zinc, rifax, and lactose.

Amy 38:21

Lactulose or some sort of stool agent.

Eric 38:23

Stool agent, yeah.

Sarah 38:25

And any side effect of the zinc, other than hoping to have increased taste?

Amy 38:29

The taste is not so great. And then it can cause a lot of GI upset. So some can’t tolerate it, but some people can’t tolerate the lactulose either.

Kirsten 38:39

So do you put them on at the minute that they’ve had emptic encephalopathy or you put it on even when.

Sarah 38:44

Yeah, yeah.

Brittany 38:45

Interesting.

Amy 38:46

Oh, but I think the biggest thing for me that I see in clinic that’s a little bit different is palliative, Doc is I see sort of the, the subclinical hepatic encephalopathy. So when people’s like, day, night starts slipping or like they’re having, like, word finding troubles, that’s new. The biggest one I have found is they just can’t remember people’s names that they should know. Those are subtle hepatic encephalopathy things. And so I’ll actually start them on once daily, and I just beg them to take it. Like, I’d love for them to have three to four bowel movements, but for the love, just.

Just take the medicine, at least something so that, you know, we go, we start with one. Okay, great. Now can you try to take it twice a day? Because these folks lives are miserable on lactulose. They spend their life at home because they have to poop four times a day. And sometimes it’s unpredictable. I spend the most time in my clinics talking about bowel movements in this patient population. It’s absolutely fascinating because it’s so important for their quality of life to not take it and then to take it.

Eric 39:43

Their number two is your number one.

Amy 39:44

That’s right. Absolutely.

Eric 39:50

All right, moving on, because I want to talk about ascites.

Alex 39:54

Oh, yeah.

Eric 39:55

How do you think about ascites in these folks from a palliative care perspective?

Alex 40:00

Yeah.

Sarah 40:01

What’s that? Drains.

Eric 40:03

Yeah, I was on my list. Paras versus drains.

Brittany 40:10

I love them. But again, I see patients on the tail end of where things are at, where we’re either going to really keep on trucking in the ICU and keep things going, or we’re shifting gears and we’re going to more hospice approach. And in those kinds of cases, it can be invaluable, especially when there’s still potentially some weeks to months of longevity, and particularly for those who have already been doing every week or every other week, paracentesis, even before the shift, it can be just hugely helpful to maintain, you know, whatever time at home possible. I think there’s a shift a little bit. I don’t think it’s borne out in a widespread clinical approach to maybe starting to consider drains earlier in the process, depending on transplant ability. But I’ve not seen that in practice yet.

Sarah 40:58

Yeah, I think it’s a tough call because I usually, in addition to being embedded in their clinic with the hepatologist, I go to their procedure unit where they do all the paracentesis. So I’m there every Thursday morning, and I see guys coming every week, every week. And, you know, it’s interesting because one of our hepatologists is a little more hesitant to put in a drain unless they’re truly hospice. And we’ve had many discussions, like quality of life, you know, just the fact of getting poked every single week. But it is a. I’ve learned that in most cases with my patients here, that it generally is when we’re thinking about end of life, that then we consider the drain. But I like Brittany, that maybe the tide is changing a bit, because I do see the benefits of having that choice, having that available to patients and.

Eric 41:51

Their families, versus coming and get a pair every week in some cases, because.

Sarah 41:56

It’S a burden on the caregivers, too. I mean, you know, I have a young, younger patient in his sixties, and his daughter’s 30 years old, and she’s bringing him every single week, and she’s got a job and a life, and, you know, so it’s.

Eric 42:10

Any thoughts about Lasix and spiral actone, especially as the disease progresses? You’re in that peri hospice or hospice area, and you’re having the societies. It’s kind of the management or pearls around those drugs you can give them.

Amy 42:24

And their kidneys are working, go for it, because there’s ascites. But I have found the bigger burden is lower extremity edema, which a drain doesn’t solve, unfortunately. And so the diuretics to me, you know, maxing them out, as long as we’re watching their kidney function, and sometimes I’ll manage it, just because I see the patients more often times, if they have kidney issues, it’ll be their nephrologist or the liver doctor. We’ll do it.

Eric 42:48

You always do the combo?

Amy 42:50

Yep. Yep. Sure do.

Sarah 42:53

Or we do B max. Sometimes we do bmx instead of lay.

Eric 42:56

Six, along with spiralactone.

Sarah 42:58

Yep.

Kirsten 42:59

And talking to them about what’s. What’s working, like, having them feel empowered to tell you, you know, is this working? How is the burden of taking it, you know, match the benefit that you’re seeing in terms of your edema or your ascites. Right.

Eric 43:12

Okay.

Amy 43:13

Therapy is great, too, for lower extremity swelling. When the lymphedema therapy, it’s a type of physical therapy where they do wraps and they go. And so in certain locations where we can get it, I’ve had patients just absolutely do so well with it when they can note, like, their blood pressure doesn’t tolerate the diuretics anymore. And so lymphedema therapy helps with lower extremity edema quite a bit.

Eric 43:36

What about itching? Another common symptom. Any pearls on itching for everyone? Naloxone.

Sarah 43:47

That’s kind of controversial. I feel you have to really discuss with pharmacy and figure out if this is. I don’t know what other folks think. I have not used it yet.

Brittany 43:55

For a patient, I would say no. In fact, when just kind of cholesterol. No to naloxone. So when folks come in and they are on suboxone, our pharmacists will actually have a switch to subutex or buprenorphine only products. Because the little bit of naloxone that could potentially be absorbed can increase by orders of magnitude. Exactly. And so I’d say absolute no to naloxone. I think along the same lines as muscle cramping. It’s a really challenging symptom to treat because a lot of the meds that we typically use end up being deliriogenic and cause undue sedation. I have not had a ton of, I’d say, success in anything systemic, trying to do as much kind of topical work as possible. I mean, you could theoretically, again, use some low dose gabapentin. You could try some zofran if there’s any sort of serotonin mediation. But it’s a really challenging symptom.

Eric 44:59

What about the bile acid sequester in the right patients?

Amy 45:02

Cholestyramine can be really helpful, but it’s four times a day, and it tastes gross.

Eric 45:07

How do you find the right patient? Like, what is the right patient for you?

Amy 45:10

I try a lot. Honestly, if they’re more yellow, they get. They get that as a first try more when it’s a static pattern.

Sarah 45:18

What about Ssri’s? Has anyone had any success with Ssri’s?

Amy 45:22

I have seen some SSri’s as well.

Eric 45:27

Which one sertraline. Is that the one that some case reports on?

Amy 45:31

Sertraline is good. I mean, anything that. That might treat their depression, that they most likely have too.

Eric 45:36

Yeah. Okay, last one. Last one. Cause I know Alex is already picking up the guitar because you brought it up. Depression. Cause got a big honking liver that’s not working. And these drugs all have some. How do you think about the. If you’re thinking about an antidepressant, SSRI’s SNRI’s, like all of these options. No.

Brittany 45:57

On duloxetine.

Eric 45:58

No. No.

Brittany 45:59

Delox, which is unfortunate because it’s such a beautiful drug, but there’s direct hepatotoxicity. We generally avoid it.

Eric 46:07

No unduloxetine. Any other.

Sarah 46:10

Lexapro is another option.

Eric 46:12

Yeah, and Lexapro is.

Amy 46:19

I have not had success with mirtazapine. It causes a lot of issues in this population. Yeah. Sedation, nightmares. And then I’ve been dabbling in more of the second generation antipsychotics, and those seem to be doing okay. So something like olanzapine or a seroquel. Sorry for the brand name, but either way, I tend to. I’ve been using a little bit more of those because it helps with sleeping anxiety as well, so.

Sarah 46:47

And nausea.

Eric 46:49

Oh, yeah. Any nausea tips?

Sarah 46:51

Lanzapine, haldolan.

Eric 46:54

Antidoprenergic agents.

Brittany 46:56

Yep. Yep.

Eric 46:57

Okay, last one for each one of you. Lightning round. One other tip for our listeners around LiverPal. Could be anything. This is the hard part. I’m gonna give you all 3 seconds to think about Amy. I’m gonna turn to you first.

Amy 47:12

Please check in with the caregivers, make sure that they are doing okay. Cause it is very hard work taking care of these patients at home.

Eric 47:20

Wonderful. Brittany?

Brittany 47:22

I want to reiterate what Amy had brought up. I think building knowledge and making sure that patients and families have an understanding of what’s going on is really critical in helping with advanced care planning and helping them walk the path.

Eric 47:36

Sarah?

Sarah 47:37

I think maintaining no judgment. You know, not every liver patient is cirrhotic from alcohol intake, for instance. I’ve had some patients actually tell me that, so they feel judged. So just kind of maintaining that openness and open mindedness.

Eric 47:53

Great. And the stigma that associated with that.

Kirsten 47:56

Okay, Kirsten, last, being excited, but also humble about taking care of this population. This is a really, really interesting and exciting population to take care of. But there’s also, as we talked about, a great deal of humility that needs to occur, particularly around prognosis. And I think that’s, you know, where our skills can come in both holding the hope and holding the worries.

Eric 48:17

Wonderful. Before we end, we’re gonna go more to that song. This is Alex, your 20 minutes. Extended version.

Brittany 48:26

The director’s cut.

Eric 48:27

Director’s cut.

Alex 48:45

(singing)

Eric 50:09

That was wonderful. Thank you, Alex, Sarah, Kirsten, Brittany, Amy, thank you for joining us on this Jerry Powell podcast.

Brittany 50:16

Thank you.

Kirsten 50:17

Thank you so much.

Eric 50:19

And to all of our listeners, thank you for your continued support.