The Patient-Doctor Relationship in Hepatology

Dr. Mary Rinella, a transplant hepatologist, talks with Dr. Adam Cifu about the human side of caring for patients with complex liver disease. She describes how she approaches patients who arrive guarded or resistant and how digging into the fear that drives their behavior helps her build trust with them. The conversation touches on the time she invests in nurturing those relationships and how that closeness often includes patients’ families, especially when she is helping them through difficult moments. Later in the discussion she reflects on the loss of a patient and the emotional weight of that experience, especially given the bonds she forms with both patients and their families.

What is The Clinical Excellence Podcast?

The Clinical Excellent Podcast, sponsored by the Bucksbaum Institute for Clinical Excellence is a biweekly podcast hosted by Drs. Adam Cifu and Matthew Sorrentino. The podcast has three formats: discussions between doctors and patients, discussions with authors of research pertinent to improving clinical care and the doctor-patient relationship and discussions with physicians about challenges in the doctor-patient relationship or in the life of a physician.

[00:00:00] Dr. Cifu: On today's episode of The Clinical Excellence Podcast, I am joined by Dr. Mary Rinella, talking about the evolving doctor-patient relationship.

[00:00:13] Dr. Rinella: I would say one thing I still have not gotten over is when I lose a patient. And I always say to my patients, "Okay, I'm going to do everything I can to make sure that you do not die of liver disease. I'm going to try to assure that to the extent of my ability," but occasionally, you know, people do. In fact, today actually, a patient of mine passed away.

[00:00:41] Dr. Cifu: Welcome to The Clinical Excellence Podcast, sponsored by the Bucksbaum-Siegler Institute for Clinical Excellence. On this podcast, we speak to patients and doctors about all aspects of excellence in clinical medicine. I'm Adam Cifu, and today I'm joined by Dr. Mary Rinella. Mary Rinella is a board-certified transplant hepatologist with decades of experience treating patients with complex liver disease. Dr. Rinella is an expert in fatty liver disease, the most common cause of liver disease in the United States. As part of our metabolic and fatty liver diseases program, Dr. Rinella provides comprehensive liver disease assessment and treatment, including nutritional intervention, the use of medications, endoscopy, and clinical trials to deliver the most advanced treatment options. While she's experienced in treating all types of liver disease, in addition to fatty liver disease, Dr. Rinella also has extensive interest and experience in the treatment of autoimmune and biliary diseases, such as autoimmune hepatitis, primary biliary cholangitis and primary sclerosing cholangitis. As part of her approach to care for liver disease patients, Dr. Rinella is passionate about using research to advance medicine. She has investigated a broad range of topics within steatotic liver disease. Mary, thank you so much for joining me today.

[00:02:00] Dr. Rinella: Thank you for the invitation.

[00:02:01] Dr. Cifu: So we're going all in on the doctor-patient relationship this season. And I was excited to talk to you because I know you have a lot of long, rich relationships with patients, but in a very, sort of different realm than I do, I think. So just how has your relationship with patients sort of changed over the years? And I'm interested in kind of the evolution of how you relate to new patients and returning patients.

[00:02:26] Dr. Rinella: Yeah, so I would say my style is one of sort of informed decision-making, and so I always start, when I first meet somebody from the medical side, is trying to help them understand their disease, the rationale behind the different treatment options and decisions, and sort of work with them to sort of achieve their goals through knowledge of their condition.

I would say something else that I do that is more on the personal level, is I really try to understand who the patient is. You know, beyond, you know, what's interesting about them, what do they do? What makes them happy? What do they enjoy? But also I try to get a read on their personality. You know, what they react favorably to, what they... Just to get a feel for how I can best sort of connect with them, I guess, would be... And sometimes, that happens with a new patient. And it's very seamless, and it's very organic, and that's great, and other times it takes more visits to achieve that, but I will say... So the biggest difference between a new patient and a return is that with a return patient, I will have already made a more solid connection. And some of my patients I've known for, I mean, 20 years probably, and been caring for them and have a very close relationship. And I would say one thing I do that maybe not a lot of doctors do, at least, not many that I've talked to, is I do share about myself, too. I'm very open about myself if they ask me. And I think that also helps deepen relationships over time because then when I see my return patients, like, "Hey, how's your son? Did he get into medical school?" Da, da, da. And I always remember things about them. And so I think that's a really... I think it's an important thing to establish that closeness.

[00:04:21] Dr. Cifu: Let me ask sort of one comment and then one question about what you said. First, just an observation. I find it interesting, I've certainly experienced the same thing where there are those people who you are sort of instantly form what seems like a comfortable, therapeutic alliance with, right? And there's very little work in that. And it's really hard to predict who those people are, right? It's not necessarily, you know, that they align with similar life experiences or whatever. You know, there are just some people you're naturally comfortable with, and it's like, "Okay, this is going to be easy." And there are the other people you struggle with.

My question about the sort of being open about yourself and who you are. Is that something that's evolved over your career? Because I certainly feel that more myself recently, while when I was younger, boy, I didn't let people in at all. Or has that always been sort of your approach?

[00:05:14] Dr. Rinella: I've always been fairly open, but I think as I've grown, I'm more confident in what I do, and I feel like I can sense, you know, when that's appropriate and not. Yeah, so maybe that has evolved a bit. I think I would say the biggest thing that's evolved over time is just an increasing, you know, you sort of know what you know. You know what you can find out if you don't know it. And then, you know, sometimes what you don't know. You know? And that's, I think, an important thing to learn and be okay with and be comfortable with.

[00:05:48] Dr. Cifu: It's funny, people have talked over and over again, you know, with these questions about confidence and I think maybe it's something we underappreciate in a really good doctor-patient relationship is that patients, although they want a great role in their relationship and in decision-making, I think people really do value sort of confidence and clarity from the doctor.

[00:06:11] Dr. Rinella: Yes. I think that's critical because otherwise... They're coming to you because they trust you. They believe in you. They want your expertise, and so when I say that I focus on shared decision-making, I do, but I also lead with, you know, the rationale for why I would recommend a given approach in a given patient. Actually, I want to go back to something that you said that made me think of something. So, you mentioned that there are some patients, or I mentioned initially, that are easy to establish rapport with, but weirdly, I really enjoy patients that are initially very resistant and difficult. And I derive great happiness and pleasure from winning them over, not just in a 'they like coming to their appointment,' but that I'm able to, you know, sort of get into their world and help them, because often it's from a position of fear that people are behaving like that. And so I really dedicate a lot of time to you know, sort of nurturing that relationship so that then they trust me. They believe in me. I can sort of alleviate some of that anxiety that they have, and I love that, 'cause... I love that.

[00:07:26] Dr. Cifu: And I totally think you see that later in the relationship. Like, if I think of the patients who I feel most dedicated to and who I feel like are most dedicated to me, it's the people when they show up in the emergency room or urgent care, the calls I get are like, "How can you possibly take care of this person? They are impossible!"

[00:07:46] Dr. Rinella: Exactly. Yeah.

[00:07:47] Dr. Cifu: And it's because, right, there's been some work, but you really do understand each other. That's a great...

[00:07:54] Dr. Rinella: Yeah, and I, in fact, right as you said that, I immediately am thinking of... You know, but I adore those patients. Yeah. So, anyway.

[00:08:02] Dr. Cifu: So one of the great things about medicine is that it keeps you humble, right? You never really master it. As soon as you feel like, "I've got this," you know, something burns you. Are there things about the doctor-patient relationship which sort of still challenges you, that you're like, "Ah, you know, this is still something I really have to work on," or something that, when it goes poorly, you're like, "Ah, that again?"

[00:08:23] Dr. Rinella: Well, my approach to the complications that I've had in my career has, strangely, again, and I was advised exactly the opposite, was, you know, I was told by somebody to not admit when you know you did something wrong or not admit, and actually, I've taken the complete opposite approach. So if I feel like something that I did, you know, had resulted in a bad outcome, I'm very open about that. And so that's something that I... I don't know. I'm not afraid of those things because I think honesty and humility really are important things. So, as far as what I still have a hard time with. So I guess one thing that just seems kind of... Not really silly, but I am very obsessive about, like, for example, somebody comes in with elevated liver chemistry tests, which is common. Right? And I can almost always figure that out, even if it's obscure, but occasionally, I can't. You know, and occasionally somebody has a really interesting portal hypertension, and I can't quite figure out why that is. That really bothers me actually, but I don't know if it's a problem necessarily. I would say one thing I still have not gotten over is when I lose a patient. And I always say to my patients, "Okay, well, you're... I'm going to do everything I can to make sure that you do not die of liver disease. I'm going to try to assure that to the extent of my ability," but occasionally, you know, people do. In fact, today actually, a patient of mine passed away. So that's really hard for me. I think, especially because I develop these relationships and with not just them, but their family, you know? So on the one side, it's good because I can sort of, I don't know, reassure or comfort the family, but it still sucks, I mean, as you can tell, yeah.

[00:10:17] Dr. Cifu: It's such an interesting way to look at it because you are... You know, there are the people who can say that, who I'm taking care of, you know, malignancies that are going to get better. Right? But so many of your patients, you know, are older, have multiple medical problems, and there may be as much of a chance that they're going to die of the disease that you're responsible for, versus competing things. So it's an interesting, almost like challenge to put up for yourself, but one which is going to be not winnable.

[00:10:48] Dr. Rinella: Yeah, but I think part of the fruit of being open and developing a close relationship with patients is that, you know, you can also, even if you can't cure them, like my patient that died today had metastatic cancer that was not anything anybody could do anything about. Okay? After liver transplantation, but I think what you can always do is make people feel better. And you can always, you know, provide comfort to the family and to the patient, even if you can't cure them. So I think that's something that you get with developing closeness.

I think it's hard to relate to somebody in a really difficult, emotionally charged setting when you don't have that level of intimacy, because they're like, "What are you doing encroaching on our, you know, very intimate time?" Right? So that I think is the fruit in a sense of, yeah.

[00:11:46] Dr. Cifu: Maybe sort of flipping around a little bit, what do you, I think, you know, appreciate most about your role in the patient-doctor relationship? Maybe something that you're really proud of or something that just really pays dividends for you, that sort of makes you feel good about what you do.

[00:12:04] Dr. Rinella: So I occasionally will get a letter from a patient or, you know, they will say to me, you know, that they deeply appreciate my care, and especially, when I hear it from family members, I feel. So that makes every difficult day worth it. You know? But yeah, so that's really, I would say, the most rewarding thing 'cause that's really why you're doing this. Right? And I really consider the position of being a doctor, like, an incredibly privileged place to be in such a close relationship that people rely on you for their most difficult decisions.

And that is... I don't ever take that for granted. So that's, I think, the coolest part of my job, other than it's really interesting and fun. It's also, like, super gratifying like that, I feel. You know? It's like your kid, your child, you know, when they come to you, and they trust you, and they're like, "Mom, what do you think I should do?" You know what I mean? That's really cool. So that's sort of...

[00:13:07] Dr. Cifu: Yeah. You know, when you say it's really cool, right? Sometimes, the sort of human interaction factor almost gets in the way of, you know, my ability to appreciate the cases. Right? And you know, as a baseball fan, I'm sometimes like, ah, I like watching games where it's not my team playing 'cause then I can appreciate the baseball, whereas if it's my team, it, like, has me on edge. I've written about this before, but I had a section chief who was intense about making a sunshine folder, which I could not tolerate the name.

[00:13:40] Dr. Rinella: What is that?

[00:13:41] Dr. Cifu: But it was like... It's keeping all those cards, and mementos, and things.

[00:13:44] Dr. Rinella: Oh, interesting.

[00:13:45] Dr. Cifu: And although I think in a moment of weakness, I was like, "Okay, I'll keep a damn sunshine folder even though I hate the name," but there are so many difficult days that occasionally having that to look at and be like, okay, you know, these are things that make you do it. It's a good thing to do.

[00:14:02] Dr. Rinella: Yeah, it's kind of a nice idea.

[00:14:04] Dr. Cifu: Well, Mary, I want to thank you so much for taking time out of obviously your incredibly busy life, and it sounds like a rough day today, to join us.

[00:14:12] Dr. Rinella: Oh, it's my pleasure. I always love talking about this, actually.

[00:14:16] Dr. Cifu: Before we finish up today, a quick addition about this year's National Clinical Excellence Award.

As you know, the Bucksbaum-Siegler Institute for Clinical Excellence at the University of Chicago is dedicated to fostering compassionate doctor-patient relationships and advancing clinical care. Each year, the Institute recognizes extraordinary healthcare professionals through the National Clinical Excellence Award.

To learn more about the award and nominate a deserving clinician, please visit the Bucksbaum Institute webpage. That's bucksbauminstitute.uchicago.edu.

Thanks for joining us for this episode of The Clinical Excellence Podcast. We're sponsored by the Bucksbaum-Siegler Institute for Clinical Excellence at the University of Chicago.

Please feel free to reach out to us with your thoughts and ideas via the institute webpage. That's bucksbauminstitute.uchicago.edu. The music for The Clinical Excellence Podcast is courtesy of Dr. Maylyn Martinez.