(Guest Lecture) Putting Your Disease Into Your Context - William Matsui, MD | RT Austin, TX Mar 25, 2023

After a while, it becomes hard to say no. If you ask enough times, you'll say yes. Thanks so much, Greg, for setting this up. It's always great to have something like this in Austin because I think Austin is a big city but it's in a very big state with a lot of other big cities. I think Austin is a place where when I moved here five years ago, I met a lot of folks from Austin who had myeloma, but a lot of them actually didn't get their care here in town. They would go out to Eastern or they would go to Dallas. What I've been impressed with being here for the last few years is that there is a great community of patients here. I think myeloma is a very, when I tell people this because I take care of all different kinds of blood cancers, is that myeloma is very special because number one, the patients live much longer than they used to. The other is that oftentimes they're getting treated the entire time they have to eat. The other is that there are a lot of different treatments. And then final thing is that it's always changing. So if I think about other leukemias or lymphomas, they're either not as many treatments, the treatments are not on the whole time, there are not as many ways of treating them. It ends up being that really it's a great resource to have other patients who have actually been through these treatments. It really is an opportunity for people to share their experiences where it actually matters to patients who are now undergoing these things. I think one of the things that I wanted to talk about today, and this was something that Greg and I had talked about, was just sort of thinking about as a patient, how do you go through and go through this morass of different therapies and different options and the lists just keep growing. And so what I thought I would do is try to talk a little bit about that. And so if we think about the treatments that exist. So as Greg was saying, when I started taking care of myeloma patients, this was in like 1998, there were like three treatments. And that's what you did. So decision making was very easy because you got one of those three. So that's sort of where we are. So now it's obviously much more complex with many different treatments. So if you look here, you can see just four patients who get newly diagnosed. This is something from a foundation called the NCCN, which goes through and makes guidelines for different cancers. And so here, if you're diagnosed with myeloma, we can split people up into those patients who might get a transplant and those patients might not. But then there are all of these sort of regimens of one could use to now treat patients. So this is just when you're diagnosed. When you happen to go through this diagnosis, you get the diagnosis, you undergo treatment and hopefully you achieve a remission. At some point you might relapse. And so the question is, is that the same list of things as there's the first time or has that list changed? So what happens is that it's actually a little bit simpler when we approach patients up front because there are a little bit fewer decisions to make, there are fewer options. But then when patients relapse, there's this sort of chart of things that people think about. There's this set of charts that has a whole different set of regimens. And then there's this chart that has another regimen. So if you look at this NCCN guideline, there are very few cancers that have more choices than I think there probably does. So how do we go through and how do we make choices? So how do we make choices as physicians and how do we work with patients to get those choices? Put them in a way that you can understand. So I was thinking about this and it's really like if you break down sort of clinical decision making. So let's say our decision is really to sort of say, look, what are we going to use to treat the person? So in a very simple way, if you're trying to make a decision, you're really trying to solve a problem. And so to do that, you have to figure out what the problem is. You have to say, this is the problem. And then one of the best ways to do it is to identify all the different solutions that you could do. And then you go through and then you decide on the best one and then you implement that one. So it's a pretty simple process. When people sort of say, well, if I have a patient and I will get a call sometimes from other physicians and say, I have a patient with myeloma and I'm wondering what to do with that. And I'll say, OK, well, there are certain things I need to know. Those would be things like, well, what were they previously treated with? What were they treated with? What were the drugs? How well did they do with that? Did it work? Did it not work? What were the side effects that the patient had? And if it worked and the patient got into remission, how long was that response? Was it a month? Was it two months? Was it six months? Was it five years? The other is that for us as, for the four of us who really work and see myeloma patients, for us, a lot of it is just, there are many different, a million different clinical trials. And so part of our job is to try to synthesize information from the trials. We like to use evidence. We like to use clinical trials as a way of saying, look, if you have A or B and that's been tested and A is better, then we should do A. The other is that there are certain things like if we look at the myeloma itself, there may be different mutations that lead us one way or another. The patient may have other health issues. So they might have issues with heart disease or diabetes or blood pressure problem, you name it, right? That we need to think about. We need to think about, you know, if we're thinking about new treatments, we have to do things like think about like, okay, if we gave someone this type of medicine before, well, maybe what we want to do is use a medicine that doesn't work the same way, that works a different way. Because if the first one failed, then the second one might fail if you're doing the same thing. There are things that are super important, like whether or not you have to come into the clinic to get the medication or whether you take it orally, right? Because that can disrupt your life. And along with that is how often do you have to do that? Do you have to do that every day? Do you have to do that once a week? Do you have to do that once a month? Because those things really impact. Like most individuals don't like coming to the clinic and getting treatment. So you know, and there are other things like the cost of the medication that we have to consider. And then the other is the familiarity, right? So sometimes we will use medicines that we've used before, right? Like let's say it worked a while back, and so we might go back to that at some point. And then the other is familiarity for us as physicians. And so it may not be that, you know, with every single myeloma therapy that's been out there, that we've used extensively all of those therapies. We don't personally know their characteristics from one to another just because there's so many coming out all the time. So these are the things that we have to consider. And there are many more things than this. But what I tell people is that I kind of like think about these things and you sort of compute about what might be the next thing. And then you sort of come up with a list of options, right? And so this is why, you know, part of like I work here at UT. UT has like this incredible, you know, it has like the world's fastest public university supercomputer is like at UT, the Texas Advanced Computing Center. The people say, well, why don't you just get a computer to do this? You can just put all the information in and the computer should fit it out because it's much smarter than we are. I think that the problem is that there are nuances to all of these. And the major nuance is that all the patients are not the same, right? So we can put all this information in, put all the trial information in, but what fits for a patient may not fit for another patient, right? So that's the part I think that computationally is very difficult to figure out. So how do we sort of sit down and talk to patients and figure out how to make decisions? So there are these sort of four models of how patients and physicians work together. And this is a little bit of a busy slide, but basically there are these four different models and the way they differ is, number one, patient autonomy. So what that really means is like the patient's right to make a decision that they want, right? They are in control of their healthcare, so they need to do that. And then the other is, is that what does the physician do to sort of facilitate that, right? So there's this one model, which is the paternalistic model, which is, you know, my parents love this model because they go in and, you know, if I will go to the doctor with my mom, you know, the doctor will say, well, we should do, you know, you have this and so we're going to do this. And I say, well, you know, what are the different things we could do? And my mom's like, be quiet because I just want to hear what the doctor has to say. So really here the physician sort of thinks about what the best course of action is presented to the patient and the patient either says yes or no, right? So the doctor is sort of codicating all the information presented with the action. The informative model, the second one is one where the physician is sort of like Google, right? So basically you sit there and say, well, this is a problem. And I say, look, this trial showed this and this trial showed this and this trial showed this. This medicine does this. This medicine does that. But I'm not going to give you any nuances about I think this is better than this or this better. I'm just simply giving you the information and you decide what the information is. So this model I don't like because you don't really need to go to medical school to work with the model, right? The third one is this interpretive model, which is basically I will sit down, let's say a physician sits down with the patient and the first thing they ask is, well, what is important to you? What are the major things that are important to you? And then if you tell me what those things are, right, like as far as side effects or your preference for coming into the clinic or you want, like what they balance quality of life versus toxicity. If you tell me those things, then I could say, well, these are things that might be useful, right? If I know sort of what your goals are, then I can sort of give you some information that sort of leads you to different options. The last one is this thing called the deliverative model, which is really like having a conversation with the patient. So it's sort of like if I say, well, what about this? And these are the upsides and these are the downsides. You might say, well, I like this part of that, but I really don't like that, right? And then I say, okay, well, what about this choice? They say, well, I really like this part and I don't really like that. In doing that, you kind of infer, like I infer sort of what is important to you and what is not important, right? Because if everything I present, you say, oh yeah, I really don't want that. I don't like that. I've experienced that before. I don't want to go through that again. So then I know, okay, that's what I'm sure called. And so I'm not going to present options that hinge on that, right? So it's really like a back and forth where I figure out what's important to you. You don't just tell me. I sort of infer it from like talking about different options. And then we sort of come together and come up with the best plan. So really there's this whole field in medicine that's emerged called shared decision making. And it really arises from this paternalistic model, which my mom loves. That was the model many, many years ago, right? And now what we've done is what we want is we want patients to be really involved in the choices that they make, right? And I think that that's super important. And so basically, it's really this deliberative model, this last one that I presented. And so basically what we do is we try to help patients understand what the information is that's out there. And then what patients help us do is to understand what is important to them. What do they want? What things do they value, et cetera, et cetera? And so what we're doing is we're going back and forth and trying to have this interaction and come up with the best plan for you, right? Because it may not be the same for every single person because people's values are different. Right? A lot of people's political convictions are different. Everything is individualized. So the way we can individualize is by identifying kind of what your values are and then where you are in your treatment and then what options you have. So this is sort of a very, very, you know, this is great. Does it work all the time? No, obviously it doesn't work all the time, right? So some things to keep in mind, like this is sort of a goal that we all have in terms of like producing optimal treatment plans. But remember that, you know, patients' values and preferences can change over time, right? They're not like what you do when you get diagnosed may not be made the same when you've gone through many different treatments. The other is that there can be a lot of good options, right? And in this case, in myeloma, oftentimes there are a lot of good options and those overwhelming, right? And so it might not be that I can say, look, this is the best thing for you. I might say, look, we need to choose between these three things, right? Let's dig down into that. Sometimes I would say the best choice is the choice that just feels right, just like it just makes sense, right? Like you say, okay, I get it. So I have an immune system, the immune system can control cancer. And so I want to do something where my immune system deals with the cancer, like that makes sense. So I want to do that. And so sometimes it's just not your intellect that does it. It's just like you have a feeling inside that says, well, I think this is the right thing to do. Like I have the most confidence in this. And what I would say is that the more confident you are, and you can't be 100% confident in any decision, but the more confident you are, I think the better you'll feel, right? I think that that's because you yourself, because I think that the way I put it, like I'm a bone marrow transplantor, so the way I approach transplantation is to say, look, you have to make a decision and we're going to do something. We're going to do the transplant or we ain't going to do the transplant, right? But if we decide to do the transplant and I start doing the transplant, I can't stop, right? You got to go, you got to keep going. And so what I want you to do is make the best decision you can now before we start, because I don't want you to say, if something goes wrong, I don't want you to say, you know what, I should have never done this. I was uncomfortable with it. I don't, you know, this is not good. So I don't want to hear that. I want to do everything I can do to ensure that that doesn't happen. And then the last thing I think is, is that just like, you know, fine wine, it gets better over time, right? So the more that I understand, you know, the more I see a patient, the more I talk to a patient, you know, like my kids laugh at this because they say, well, my, you know, my memory is like, I have the worst memory in the world. Like I can't remember anything. But I actually do remember patients and sort of what they say, what they feel. And I think that, you know, I can sort of, you can cut through a lot of this stuff much more efficiently as the further you go along with the practitioner. So I, and so this gets to the, a little bit about like, well, I have a doctor here and I have a doctor here and I have a doctor here. And I want you all to be like, get together and figure out what's going on. And I'm like, that is impossible. It's impossible for us to do, right? Because I don't know that they all have the same understanding of your values that I do, right? We can sit there and compare papers, compare trials, but I don't, we don't all have the same understanding of you, right? Because there's the familiarity involved. So I think that these are complex things that just that just impact this shared vision, make the process. So what can, what can a patient, what can you do to sort of make sure that you're doing the best job as a part of this process? But what I would say is these are some practical tips. The one is to really decide before you go to the visit, decide what you want to accomplish if there's something you want to accomplish. It may be like, I just want to know my blood counts are okay. Or I have this problem, the side effect, and I want to talk about this because I need to figure this out. So I would go in and you can't go in with a list of 50 things because this visit is not infinite, right? And so pick things and then try to sort of prioritize them. But if they look, if we hit these things, it will be good. If we hit a few more, it'll be great. But make sure we talk about things that are most important to you at that point. Right. And then along with that, make a list of questions. Like oftentimes you have these topics you want, but then there are these questions that go along with that. So make a list of questions. Right. And I think I try to go through, I think I'm pretty good at going through almost everybody's question. You know, that's easier to deal with than sort of all the goals. And then the other is, is that I understand that, you know, people are all different. Like when, you know, I was in Baltimore and you, you know, I'm from California. You go to, I went to Baltimore and like people just had a different way of thinking about things. People had a different way of talking about things. And so I could understand when I would get in the room with someone that they might be like, I don't even understand what this guy is saying. Right. They just do things in a different way. And then coming here to Texas, it's like, oh my God, like people are like all over the place. And so I think what you want is, what I want to know is, is that I want to know that you understand what I'm saying. Right. And it's important to me that you actually understand that information. And so if you, but I can't, there's no tests, there's no like red light that flashes behind you that says, oh, this person's not getting it. Right. And so I think that, that you want to make sure that you get the information that you need. So, so oftentimes I am known for speaking too fast. And so I think that it would be good if I talk slower sometimes because people can absorb the information a little bit easier. I think that if you don't understand something, you can ask the person, you know, can you say that? Can you, can you like explain that again? Is a very good phrase. Right. And maybe do it in a little bit different way. Oftentimes, like I will draw a diagram or I'll draw something that sort of maps out how things go. I think that that's really good. It's a visual aid. And then at the end, I think it's, it's good to like, I always try to remember to say at the end of the, you know, at the end of the deliberation, say, okay, so we talked about this and this is what I think the synoptics of what we talked about it. And this is what I think we are going to do, right. To just kind of gel it all at the end. And so I think that if you don't get that, then you could sort of say, look, can you just give me the highlights of what we talked about? So I just understand in my mind what we're going to do. Right. I think that's a fair thing to have. Understanding your medical history. Like in my Loma, as I was saying earlier, people go through a gajillion treatments. They have a gajillion things that happen during those treatments. It's hard for us to go through your records. Like if you look at a chart that I write, I'll say, you know, September, 2020, they got Revlimid, Velcade, and Dexmed. You know, in November, they got a transplant. In January, we started on maintenance and then three years later we started on this. But I don't, there's no nuances to that. Right. I just know kind of what I did. And so I think that if you kind of understand that timeline as well, and you say, okay, I really had problems here and I really had problems here, but this was easy, this was easy. So I think that understanding your own medical history is good. And, you know, the other is, is that I had this experience where my mother-in-law had something, we went to the emergency room and so I'm sitting there and the, you know, there was, she must have been asked the same set of question like 10 times. Like what happened? How are you feeling? Blah, blah, blah. And it ended up that every time she gave the answer, it was different. And I was like, oh my God, like, how are you going to do this? So I, so I'm like, you got to get your story straight because if you change your time, I think ask about future treatments, ask and say, look, if this works or doesn't work, what would you do next? Cause I think that that allows you to kind of map out ahead a little bit, understand timeframe. So it may be that we have to do something today or maybe that we have three months.