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Dr. Rahimi:
Hello everyone, my name is Robert Rahimi. I'm a Physician at Baylor University Medical Center in Dallas. And we're here to talk about HEar My Needs: Enhancing the Patient and Provider Dialoguefor hepatic encephalopathy. And it's my honor to be joined with Arun Jesudian. Arun, can you introduce yourself?
Dr. Jesudian:
Yes, I am a Transplant Hepatologist at Weill Cornell Medical Center in New York Presbyterian Hospital in New York. So, thanks, Bob, for that.
And I wanted to ask you, if you could get us started by talking about a patient journey when it comes to hepatic encephalopathy and some of their perspectives that you've encountered when you're taking care of those patients?
Dr. Rahimi:
Sure. Yeah, that's an interesting question. So, if you think about the patient journey, it's actually important for the family to be involved because as you know, hepatic encephalopathy, it's reversible, but it's a neuropsychiatric disorder where patients get confused. And so, sometimes, the process of patients being confused, it's the family members that you actually have to talk to and interview. However, the way it works, at least at our center, and I'm sure at yours is, you know, patients have, you know, cirrhosis, or chronic liver disease with portal hypertension. And one of the end stages of these complications of cirrhosis and liver disease is hepatic encephalopathy or confusion of the brain. And when patients come in, you know, sometimes their first signs or symptoms that they talk about is, you know, foggy brain or difficulty concentrating, maybe even sleep-wake cycle disturbances. And so, through that process, as I'm sure you do in clinic, you talk to them about what hepatic encephalopathy is and what the treatment is.
And through that journey, when we talk about, you know, starting patients on, you know, lactulose for their initial either covert episode, and having 2 to 3 bowel movements, getting rid of the toxins of ammonia through the stool, we do tell them, hey, look, in about a year or a year and a half, you might have an episode or two of overt encephalopathy where they get admitted to the hospital.
And that journey is a little different. I'm going to turn it to you and see, you know, I sort of touched on the outpatient covert encephalopathy and considering starting some therapeutic options like lactulose. But if someone comes into the hospital or their journey, the patient journey, or the family attorney, what do you think Arun, how do you guys handle that?
Dr. Jesudian:
Yes, just as you said, it is a relatively common occurrence for patients with hepatic encephalopathy to go on to develop overt episodes, where they may be grossly disoriented or even in a coma. And they are sick enough to where if they were to call the office, we’d tell them to go to the emergency department. And so, that is one of the most common admissions we see in our patients with cirrhosis and decompensated cirrhosis, so advanced cirrhosis with portal hypertension.
Patients with hepatic encephalopathy who come into the emergency department, usually get admitted, they get a workup to figure out why they are newly confused or more confused than they are at baseline. And it's important for us to think about precipitating events when that happens, things like infections, or kidney and electrolyte problems, or taking sedating medicines, or sometimes not having enough bowel movements, having trouble with taking their lactulose or their lactulose working for them. And we eventually admit them. We work through those different problems, we treat their hepatic encephalopathy often with a combination of lactulose, which, as you mentioned, helps them get rid of ammonia through promoting bowel movements, and rifaximin, an antibiotic that works within the intestine.
And then it's really important for us to plan for their discharge to make sure they have appropriate follow-up, that they have access to their medicines.
But I think another piece of that is educating them about this condition, why they've developed it in the setting of their liver disease, what they can do to treat it, but what they can also be on the lookout for in terms of warning signs.
So, I'll ask you, Bob, when you are talking to your patients who maybe were newly diagnosed with hepatic encephalopathy, what do you tell them about it? And then also, what do you listen to in terms of what they're telling you?
Dr. Rahimi:
Yeah, no, that's a very good question. And it's actually challenging because as you know, you can talk to the patient and tell them while this is, you know, hepatic encephalopathy is confusion in the brain due to the toxins building up from the liver that can't be cleared. And you talk to them about how they can titrate their medicine, like the first therapy is lactulose. The hard part, as you know, it's hard to tell them how to titrate to, you know, 2 to 4 bowel movements a day. A lot of people don't even like to have 1 to 2 bowel movements a day. So, it's very important to educate their either legal authorized representative or their loved one that's in the hospital with them.
And as you mentioned, things to look out for specifically, you know, infections, you know, make sure that they don't bump into things where they can get a cut on their leg, or if they have, you know, some animals, they have dogs or cats, sometimes, you know, cat scratches or bites can lead to infection and put them into encephalopathy. Looking out for GI bleeding and all that, so that becomes important.
However, one of the important parts to their journey is seeing them quickly within hopefully a week or two of discharge. And I don't know if you guys do that. But we try to engage that because, as you know, when we talk to patients and their family members, they only absorb probably like 10-20% of what you tell them. They have a lot of other things going on in the hospital. And so, really the key is to talk to them in a clinical setting and bring them back to answer further questions.
And what do you do, Arun, do you do something similar? Or how's yours – how do you guys approach this situation?
Dr. Jesudian:
We do. We have a similar approach to you. We've tried to tackle these admissions for hepatic encephalopathy in a number of ways, and a lot of overlap with what you mentioned. So, certainly want to make sure the patients are on the right medicines, that they've been prescribed those, that they're not running into any access issues at the pharmacy. We also make sure that they have close follow-up within a week or two, either with us hepatologists or one of our APPs, a PA or a nurse practitioner or maybe even their primary care doctor or a local gastroenterologist if they live further away. We do engage their caregivers, so important, as you mentioned, they are really essential to optimizing care of patients with hepatic encephalopathy. Because when they're impaired, they commonly maybe forget to take their medicines, don't take it properly, don't even recognize when they are that impaired. So, a caregiver is really an asset to us as physicians taking care of patients with hepatic encephalopathy.
And one thing that we run into commonly is that patients who are impaired by ammonia and toxins affecting their brain have impaired quality of life. But those caregivers can also get burned out because this is a big undertaking and there's a lot of stress that could be involved.
So, do you encounter that? And how do you approach or support both the patient and their family or their friends, their caregivers?
Dr. Rahimi:
Yeah, no, that’s a great question. And that's actually probably one of the most common, I guess, complaints, if you want to call it, from their caregiver, because they're the ones that first recognizes the issue, right, that they're confused. And patient doesn't know, they think, ‘Well, I'm a little off,’ but they don't know they're confused. They don't know they're going into the hepatic encephalopathy stage. So, their caregivers can maybe increase their lactulose, trying to have some more bowel movements. But as you know, they call our office, ‘Hey, you know, my loved ones not feeling great,’ that's when we tell them to come in. But for them, it's a burden because they have to work to you know, potentially, let's say keep the insurance for these patients. And so, sometimes they dropped them off at the ER and, you know, they don't come in and see them in the hospital for a couple days until they can get off work.
So, it's a little challenging and engaging their caregiver on what to do how to titrate these medicines becomes very important. Because their experiences do matter. It's just very difficult in the acute setting.
And so, I want to sum up, I guess, or at least ask you if there's any other things that we have left out during the patient journey or perspective or a way that these patients can get engaged by their loved ones, or if you have anything to add, Arun, before we end?
Dr. Jesudian:
Yeah, you know, the last thing I'd add is that I try and get a sense of who the patient is, what they may do for work, you know, how their cognitive state impacts their life. And I keep that in mind when I'm taking care of them, so that that's one, you know, added piece of the puzzle when we're caring for patients with cirrhosis and hepatic encephalopathy.
How about you, anything to add?
Dr. Rahimi:
No, I think that's a great point. You added that little tidbit, and I think that's a great way to end. So, we appreciate you all joining us and until next time. Thank you very much.
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