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Join us for a discussion on the critical intersection of diabetes and liver disease. Our guest, Sarah Bauer, a pediatrician, shares her personal journey and insights into the recent screening guidelines released by the American Diabetes Association. From the importance of early detection to bridging the gap between research and practice, we explore actionable steps for improved patient care and advocacy.

Sarah Bauer is a pediatrician.

She discusses the KevinMD article, “Diabetes and liver disease: urgent screening needs highlighted by personal tragedy.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Sarah Bauer. She’s a developmental pediatrician. Today’s KevinMD article is “Diabetes and liver disease: urgent screening needs highlighted by personal tragedy.” Sarah, welcome to the show.

Sarah Bauer: Thank you so much for having me, Kevin.

Kevin Pho: So let’s start by briefly sharing your story and journey.

Sarah Bauer: Sure. So as you mentioned, I’m a developmental behavioral pediatrician, and this story started with my dad. So my dad was diagnosed with stage four hepatocellular carcinoma on March 14th, 2023, and he died on May 12th, 2023.

And so, to be sure, I come to this first as a daughter who happens to be a physician. And so I think that I’m certainly not a liver expert or a cancer expert, but I think what we learned throughout his journey is important, and I think that to honor and to share his story, and to put humanity and voice to the data and the guidelines, is important.

Kevin Pho: All right. So tell us about his story and what you went through.

Sarah Bauer: Sure. So as I mentioned, from diagnosis to his death was very quick, and so I think that our family and my father had a crash course in the medical system. We also had a crash course in understanding what some end organ complications are with diabetes.

And so I think that throughout the process, my father never asked why it happened to him, but he asked how. And I think that how centered on the fact that he did everything that he thought he was supposed to do. So he regularly followed with his primary care physician, his primary care physician followed all of the guidelines as put out by the American Diabetes Association. And I looked at that throughout his journey, but I also looked at it later.

And then afterwards, I would say June 25th, 2023, my cousin shared an updated guideline with me from the American Diabetes Association. And at that point, which was too late for my dad but hopefully not for other people, they had updated the guidelines on screening for liver disease, specifically nonalcoholic fatty liver disease and nonalcoholic steatohepatitis. And this is how this article all came together.

Kevin Pho: All right. So tell us about this article. It’s titled “Diabetes and liver disease: urgent screening needs highlighted by personal tragedy.” For those who didn’t get a chance to read this article, tell us what it’s about.

Sarah Bauer: Sure. So the article is literally about my dad’s story. And so his journey started in December of 2022. At that point he was with his annual visit with his doctor, his doctor checked liver function tests as recommended, and there was a mildly elevated AST. My father was not having any symptoms at the time. But through the diligence of his primary care doctor, he followed that up.

And I actually looked at that and talked with his doctor later about it, and I often thought that could have been something that could have been easily overlooked, right? You could have said, sometimes it gets elevated, it’s not a big deal. But he was diligent, he followed up on it. And after that, it led to, he screened for autoimmune hepatitis, hep B, hep C, he had him stop all supplements that he was taking at the time.

And then from that, the liver numbers kept going up. And so his ALT, his bilirubin, everything, that piece was the same. And then there was a liver ultrasound which showed multiple nodules in his liver, a CT scan, a liver biopsy, and that’s how it all came to be diagnosed.

Kevin Pho: So for those who aren’t familiar with that connection between liver disease and diabetes, because whenever you think about diabetes, liver disease isn’t often the first thing that comes to mind, and you did mention a few diseases that were connected, like nonalcoholic steatohepatitis, so what are some other liver conditions that people with diabetes are at risk for?

Sarah Bauer: Sure. So this is where I would say I’m not an expert in this. So I think as a developmental pediatrician I would probably refer to my adult medicine colleagues for that.

I think I can speak to some of the end organ complications that he was screened for that are part of those American Diabetes Association guidelines. So his eyes were checked on a yearly basis, his kidneys were checked on a yearly basis or a more frequent basis sometimes, cardiovascular risks were assessed, A1C was assessed. And those were all, he didn’t have those complications.

And so I think that when you look at what the screening guidelines are, and even if you look at the guidelines from the American Diabetes Association, there’s a lot of opportunity for interpretation, and there’s a lot of opportunity for how to implement. Yes, liver disease is an end organ complication of diabetes, but how do we screen for that?

And I think my dad went straight from being a healthy, active person to having stage four liver cancer, and I think it gets to the insidious nature of liver cancer in and of itself. So I think there’s a lot of unknowns with his story as well.

Kevin Pho: And in terms of the American Diabetes Association guidelines, what are their recommendations when it comes to screening for anything related to liver? Is it just simple liver function tests, do they require anything more? What are their general guidelines?

Sarah Bauer: Yeah, so from my interpretation of it, it says look at liver function tests, and so those are to be checked on an annual basis. And correct me if I’m wrong, Kevin, but I think it says to look at that. And they were, and that first indication was that mildly elevated AST.

Kevin Pho: Well, tell us about the medical journey and his interactions with the health care system. And speaking as a physician, I guess on the other side, from the family side, what was that experience like for you?

Sarah Bauer: It was incredibly difficult, I’ll be honest with you. I think that his primary care doctor was definitely a trusted colleague, a trusted source of information, and he was with us and supporting my family and my dad up until when my dad died.

So my dad died while we were on a long anticipated trip to South Carolina. So we ended up having to leave pretty quickly, because he wanted to go, it was approved that he should go by his physician team, but then when we got down there it was very evident that we needed to leave, and he was declining very rapidly, and we didn’t make it home.

And I think that throughout that process we interacted with health care teams that we had never encountered before, and actually had Googled a trauma center, and that’s how we ended up where we did. And I can’t speak highly enough to that team that we worked with in South Carolina, and how they supported my dad, how they were compassionate and kind.

I think where I found it difficult, where my dad found it difficult, where my mom, who was there with him throughout the whole journey, was, it’s overwhelming, to be given all this information even as a physician. You’re rapidly taking notes, it’s out of my area of expertise, I’m trying to help them, they’re trying to face questions of their own mortality when they were living their lives and enjoying them days before.

So I think that it’s very difficult, it’s very humbling, but it’s also one where my dad had a first opinion, he had a second opinion that his primary care doctor also encouraged him to get, which I think was wonderful. I think as a physician myself I was able to navigate that easier for them than, I can’t imagine what it’s like to navigate those systems without that expertise or knowledge.

Kevin Pho: So as a physician, what specifically did you do to help navigate that situation? Because, as you know, I’m a physician myself, and sometimes a lot of the things that we tell patients to do, or order for patients, and referrals, we actually don’t know ourselves. So as a physician yourself, what are some specific things that you did that you felt helped navigate the situation for your parents?

Sarah Bauer: So I immediately called one of my attendings from medical school, and he was referred to me by one of my colleagues as well, who’s a friend from medical school as well. And I called him and I said, this is the situation, we need help. And he helped expedite, he helped us know who to call, like, who are the hepatocellular carcinoma experts in our area, how do we make sure all the slides and all of that gets taken care of and gets to the right place. And so he helped point us in the direction that we needed.

And I think that fell a lot on, I think my parents were like, listen, we need help. And my parents are very savvy people that were able to navigate things up to this point by themselves. And so for them to ask for help, I think the role switch happened quickly, and that was also something that was a lesson, and also very humbling. And you take it very seriously, you want to help your family.

And I think, looking back, and this is hindsight is 20/20, I wasn’t delusional that stage four hepatocellular carcinoma is a terminal diagnosis. I think my dad knew that too, my mom knew that. But I think what didn’t happen, and I don’t think anybody could have predicted, was how quickly he declined. It was in rapid speed.

And I think that I look at it and I wonder, gosh, would the conversation about palliative care, should that have happened sooner rather than later? It was a passing word that we learned about when we got down to South Carolina. And it’s not that we didn’t think about it, but my dad wanted to fight it, he wanted to stabilize the tumor growth, and he wanted to live. And so I think that that’s something that I look back on, and I wonder if that conversation should have just been put out there, even if he decided, that’s not what I want right now.

Kevin Pho: So of course there are so many patients with diabetes. So what kind of messages can they learn from hearing your story and the story of your father?

Sarah Bauer: That was a great question, Kevin. I think that a lot of my learning was in retrospect, so it was after the fact.

And so after my dad died, we came back home, and I quickly reached out to his oncologist after things had settled down a little bit, and just asked, like, what organizations do you recommend connecting with? And that’s where I encountered and became part of, as a caregiver, as a family member, a liver cancer community as part of Blue Faery, that’s F-A-E-R-Y, which is a great organization. And it’s founded, primarily for those of you who don’t know, to prevent, to fight, to cure, to treat primary hepatocellular carcinoma.

And that organization has been a wealth of support for caregivers, but also learning the stories of other people who went through liver cancer. And so I had a lot of questions like, did you know, did you have diabetes, how was your journey, what were your risk factors, things like that.

And so I think what I learned was that this conversation just needs to happen. So if you have diabetes, you need to talk to your doctor. Liver disease is an end organ complication, so what are we doing about it?

And I think also, as I think about lessons for clinicians too, it’s hard to separate those roles, like what would I want to know? And I think that as a physician, this is the opportunity to participate in national meetings, international meetings, committees, where they’re providing more specificity and clarity to what those liver disease screenings should be. Because LFTs alone are not sufficient. But also, doing every six-month ultrasounds with an AFP is not feasible for every single patient with diabetes. So how do we address that as a health care community, I think, is another opportunity.

Kevin Pho: So as you reflect on this experience, and I know it’s very difficult for you to share, so thank you so much for sharing that story, how did it affect you professionally as a physician? Has it changed anything that you did when you see patients in the exam room?

Sarah Bauer: A great question. I think it’s changed, I think everyone who’s gone through, I mean, this is a universal human condition, right, of loss and grief. And I think it affects you in very unexpected ways, and I did not anticipate the way it would affect my role as a physician.

And so in the world that I live in, I’m talking with families about their children. So in terms of when development happens in a different way, or when their expectations and dreams for their children happen in different ways, how does that, that’s also a form of grief and loss. And so the conversation was really centered about how am I in those interactions, and it absolutely changed me. I think initially I found it very hard to be in those conversations, to be very honest.

And I think it’s also changed the way I want to focus my career. So I think right now it’s really focused on education and talking and holding space for students and residents and fellows as they go through their training and have to have these difficult conversations with families over time. It’s part of the most important thing I think we do as physicians, which is walking with people through times of uncertainty. And I think that that’s a lesson that I learned, and I think it’s changed me forever.

And so in a lot of ways, of course I would never want this to happen to my dad, but I think he’s absolutely still here with us, and that relationship just changes, at least kind of how I believe, that it changes, it doesn’t end, it changes. And I think that’s how he’s continued to live on through myself and my family and all of those friends who knew him.

Kevin Pho: We’re talking to Sarah Bauer. She’s a developmental behavioral pediatrician. Today’s KevinMD article is “Diabetes and liver disease: urgent screening needs highlighted by personal tragedy.” Sarah, we’ll end with some of your take-home messages that you want to leave with the KevinMD audience.

Sarah Bauer: Sure. So I think first of all, the take-home message is that if you have diabetes, talk to your physician. Talk to your physician about those end organ complications, make sure you’re keeping up with the guidelines, and also, if more specific screening is needed, what does your doctor recommend? I think asking questions is critical.

I think connecting with broader communities, when you’ve been diagnosed with a disease it can be very isolating, and those fears can be very debilitating. So I think places like the American Liver Foundation, Blue Faery, those are wonderful places to connect with. And I think also for clinicians, there’s patient education resources on there that can also be very supportive.

And with that, I think also for clinicians, I think remembering that in the midst of the challenging health care landscape that we dwell in right now, we’re still humans helping humans and trying to support them in their journeys of uncertainty. And I think allowing those processes to help us develop more, and to be more evolved humans, I think is also critical.

Kevin Pho: Sarah, thank you so much for sharing your story, perspective, and insight. Thanks again for coming on the show.