Video
Patient Education of HE
Author(s):
Kimberly A. Brown, MD, shares approaches to educating patients on management of hepatic encephalopathy and the importance of medication adherence and nutrition.
Arun B. Jesudian, MD: Is there a way that you educate your patients about [hepatic encephalopathy]? I find this to be challenging. Even for you and me today, it’s tough to talk through the pathophysiology. We kind of wave our hands and say we don’t fully understand it. How do you explain the conditions to your patients and why they should be taking those medications?
Kimberly A. Brown, MD: I have 40 minutes with a new patient. I would say 30 minutes is spent with a diagram talking about cirrhosis and portal hypertension because everything they experience is related to portal hypertension, including encephalopathy—so helping them understand sort of why these things are happening and then helping them understand how we try to mitigate those effects with sodium restriction, water pills, rifaximin, or variceal banding. So just trying to help them understand why it’s happening and then for each of those conditions, how best to manage it.
Arun B. Jesudian, MD: Yes, I feel the same way, and unfortunately, I’m not always able to…draw out a diagram for them, but I think it is extremely helpful when they can see a pictorial representation of portal hypertension and why these problems are happening. And when it comes to the medications themselves, do you counsel them about anything in particular? Certainly, too much lactulose would cause diarrhea, which is problematic. Do you tell them anything else so that you might improve their likelihood of staying on the medications?
Kimberly A. Brown, MD: I think the biggest point to try to get across is that this is not an intermittent treatment; it’s a preventative treatment. Sometimes patients walk away with a medication, and they think they’re only supposed to take it if X, Y, and Z happens—but in fact, we’re trying to prevent X, Y, and Z. So, it’s mostly adherence. With lactulose trying to really not be constipated, try to have those bowel movements every day, to take extra doses if they do become constipated, and to hold it if they get sick. We don’t want them to have ongoing diarrhea if they’re ill and losing fluids because that by itself can precipitate an event. And for rifaximin, making sure that they take it twice a day, don’t miss doses, and keep taking it to try to prevent those episodes.
Arun B. Jesudian, MD: And when you come across the patient who’s clearly adherent but has persistent or refractory hepatic encephalopathy, what do you do at that point? Do you conduct any further diagnostic work-up? Do you add on third-line therapies? What’s your approach?
Kimberly A. Brown, MD: I don’t think I have a third-line therapy, but what I do is I look for large shunts. So I will often either go back to their original cross-sectional image or repeat a cross-sectional image to look. I have had a handful of patients in whom we’ve been able to occlude very large shunts in their groin or elsewhere in the abdomen that has helped. So that’s really the next step for me. Hopefully, these patients are listed for transplantation. Unfortunately, as you know, you can’t get an exception for encephalopathy.
It’s interesting, having sat on the [Liver and Intestinal Organ Transplant Committee] , we talked about MELD [Model for End-Stage Liver Disease] exceptions and how we’ve standardized those. And really, if you look back at the philosophy, we’ve altered the way we’ve allowed exceptions based on mortality risk for the patient. I think moving forward, we’re going to see that there is a mortality difference in patients with recurrent encephalopathy. Hopefully those data can support MELD exceptions, but currently they don’t.
Arun B. Jesudian, MD: Right. I agree completely with you. This is such a stressful type of patient to manage. When you have that patient whom you know has brittle encephalopathy, they make you very nervous about their clinical course, particularly if their MELD score is low and if their access to transplant is low.
I also agree with imaging for spontaneous shunts as a cause of refractory encephalopathy. We found that although we’re getting MRIs usually every 6 months for HCC [hepatocellular carcinoma] screening, the radiologist is not always looking for shunts. We often have to look ourselves or ask them to revisit the images and see [whether] they can see a splenorenal shunt, for example, that we might embolize in a situation where the encephalopathy is really refractory and where we can tolerate some worsening of the portal hypertension.
Kimberly A. Brown: Have you ever used BRTO [balloon‐occluded retrograde transvenous obliteration]?
Arun B. Jesudian, MD: I guess we have, but usually when there’s a combination of a bleeding problem and we find large shunts where the patient can benefit. I have not, that I can recall, used it exclusively for encephalopathy. Have you?
Kimberly A. Brown, MD: I thought about it in one patient. Unfortunately, that individual had an untoward event, so it was difficult to understand whether it would have been effective. But it does actually increase portal flow to the liver, so you might think it might lessen shunting. It’s just something that I’ve thought about in the past for these patients who have bad recurrent encephalopathy.
Arun B. Jesudian, MD: I think certainly as interventional radiologists become more comfortable with these advanced procedures, we’ll probably be utilizing them more and more than we have been traditionally. Especially if you can improve the usual flow through the liver. It has to benefit the patient in a number of ways that we might not see until after the fact.
Thinking holistically about these patients, nutrition is certainly important. Do you counsel them about nutrition? If so, what do you tell them, or…do you have a dietician or a nutritionist who’s involved?
Kimberly A. Brown, MD: Yeah, great points. We do have a dietician that sees all of our patients with liver disease. But one of the things that I’ve been saying for years—again, you and I were both at a meeting recently, and Jennifer Lai, MD, said out loud—eat 6 meals a day and especially the meal at night right before bed. What I do tell patients, all of my patients, is we all need glucose for our hearts and our brains. If we are not taking nutrition, our livers make it for us. And the building blocks for that are our muscle stores, those amino acids.
If it takes you and me a long period of time to move into a fasting state, it sometimes takes patients with advanced liver disease just a few hours. And so it’s critical, in my opinion, that they eat small meals throughout the day, and the most important one is that one at bedtime. In fact, we just saw some information that nighttime feedings were actually more beneficial than daytime feedings for patients with advanced liver disease. Now I don’t know exactly why that is, why night would be better than day, but I think the important point here is your longest period of fasting is going to be between bed and breakfast. So I do counsel all of my patients on that.
Certainly, sodium restriction is important. I try to help them understand how much salt they’re eating. The story that I tell is that if you’re a normal American, you’re eating about 7000 mg of salt a day. If you simply take away the saltshaker, it’s about 4000 mg. I’m asking them to get to 2000 mg, and they think that’s a big number. In some patients, in the absence of water pills, I can only get them to urinate about 600 mg out a day. So, I say do the math: You’re taking in 2000 mg, you’re peeing out 600 mg, so that means you’re going to retain salt and water every day. Water pills can only do so much. We talk about protein too. I try really hard to emphasize that protein should be taken in some form at every meal. People don’t know what protein is, so that’s where the dietitian is helpful.
Arun B. Jesudian, MD: Yes, I agree completely. These patients oftentimes find it difficult to eat large meals, they’re full of ascites, they’re taking lactulose, which doesn’t taste very good and bloats them, and they generally feel ill. And I think talking about what those small meals should consist of is important because usually they can only accommodate a small amount at a time. But if they’re doing that frequently and doing that before bedtime, you can offset at least some of this muscle breakdown, which is so deleterious in terms of encephalopathy, their overall trajectory, and—if they are going to become a transplant candidate—their ability to get through the surgery and recover in a timely manner after that major surgery.
Transcript edited for clarity
