Ryan Huey, M.D. Hi, I'm Dr. Ryan Huey, assistant professor in the department of GI Medical Oncology at MD Anderson Cancer Center. And today I'm joined by my colleague, Melanie Cavazos, senior social work counselor here at MD Anderson. And this is the Cancerwise Podcast. Melanie, thanks for joining me. We're here to talk about a topic that can be really daunting for patients and caregivers: advance care planning for the end of life. We've been working together for several years now and trying to help people navigate this process. And there's some common misconceptions about advance care planning that we'd like to try to debunk today and also share some tips about maybe how to start these difficult conversations. So, first let's talk about what advance care plan is. How do you define it?  

Melanie Cavazos Yeah, so advance care planning is a big buzzword now. The way I like to define it is that it's an ongoing process of communication about goals, values, wishes, in terms of your health care decisions. So, we want patients to talk about this so that we can help care for them in a way that supports their goals. And that we want their families to talk about it as well so that we can all be on the same page when we're providing the best health care possible. And that's what I would define advance care planning as. Now, because it's an ongoing process, it's ongoing communication tool, when, as a medical oncologist, do you have these conversations with patients? 

Ryan Huey, M.D. Yeah, I think that there are several different times when these conversations are needed. Sometimes it's at these big, harrowing moments, admittedly, like when somebody has a new diagnosis of cancer or potentially when the cancer has unfortunately gotten worse. Sometimes it is when there's a hospitalization or a complication of care and someone is just a lot sicker than they were previously and it sort of serves as one of these moments where it's like, "Oh, this circumstance is really different." I think related to that, it could be appropriate whenever there is bad news of any kind. But to be honest, you don't have to have a big moment in order for these conversations to be appropriate. In fact, a lot of this is just acknowledgement of serious illness in general. Just the reality of that situation is these conversations are always appropriate, even if we're not in the middle of a crisis or in the middle of bad news. And perhaps that might even be the best time to have some of these conversations. Now that we've introduced the topic, let's dive a little bit deeper. Do you mind giving a bit more about what advance care planning is and maybe why it matters? 

Melanie Cavazos Yeah. So, a lot of times, first thing people are going to think about when you say "advance care planning" is advance directive documents, right? So, we're talking medical power of attorney, living will, out-of-hospital do-not-resuscitate documents. Those are kind of, if you're not in the health care setting, that's what you're going to think of. And those documents are incredibly important. The conversation about what's in those documents, in my opinion, is just as important, maybe more important than the documents themselves. The reason why it matters is it's a way to give the patient a voice and give them some control. Having a serious illness like cancer, you lose control in a lot of aspects, and this is a way to give them back that control. They get to decide what you want in health care. There may come a time when they can't communicate with us anymore for a multitude of reasons. They can't tell us what their wishes are anymore. They can't tell their family what their wishes are. And if they haven't had these conversations, then we have to guess and their families have to get what they would want in certain scenarios. And so, it's really important so that everyone knows and we can honor those values. We can honor these goals when someone can't talk with us about them anymore. 

Ryan Huey, M.D. And you kind of bring up like, this has more to do with the conversation than what's on the paper. The paper is kind of a cold summary of all of the nuances of the conversation, what somebody really wants, right? And so, you probably give the piece of paper to somebody and they're like, "What do I do with this?" 

Melanie Cavazos All the time. 

Ryan Huey, M.D. Yeah. 

Melanie Cavazos All the time. But it is a good way to start the conversation of, you call me in to come see somebody and talk to them about that. One of the ways I can start that conversation is, "Have you done your advance directive documents?" And that's kind of a gateway for me to be able to have longer conversations where we can talk about goals and identifying what those goals are, what they want in their health care, what decisions they want to make in certain scenarios. And a lot of times patients will ask me, they'll, you know, "What decisions are we talking about?" They can't even grasp that concept in certain times. I'm sure you get asked that question too, and so when someone asks you that, you know, what decisions, what are we talking about here? 

Ryan Huey, M.D. Yeah, I think a lot of it goes back to the notion that you just mentioned. How do you want to speak for yourself if you're not able to do so? And some of that gets into, who do you want to be responsible for that voice, who is that voice, especially in big families, where there could be complex decision-makers. There are many times where that's a very easy decision. There are many times where that is a much more difficult decision and getting family members in particular can be, on the same page can be really challenging. And so, who's sort of in charge? And again, if you were to get sick unexpectedly or suddenly, what would the patient want done? I tell people, I want you to be the boss. That's the most important thing here. And all of us are otherwise here to support you, including your family. And so, what types of medical interventions would you want done or not done? It becomes important for some people to talk about if they want life support measures. And want is maybe not the right word. Nobody wants to be on life support, but we have to talk about some of these hypothetical conversations because sometimes there is not an opportunity to just hit the pause button and say, "I don't know if this is the best thing for me." We like to think that we can be really thoughtful and methodical about decision-making. Listen, I like to make all decisions that way, but sometimes things happen unexpectedly and sometimes things happened really quickly. And so, it becomes important to have some of those hypothetical conversations. And I think to that end, sometimes it's, where do you, what do you want the end of your life to look like? Where do you want to spend that time? Do you want to be at home? Is that a big priority to you? Is it OK if you're in the hospital? Is it OK if you're in an ICU or on a breathing machine or unable to communicate? And some patients say, "Listen, that's, if that's the circumstance that I'm facing, that's not what I'm interested in. And then we respect those wishes. We're not here to pressure anyone into making any decision. But then again, we just want to make sure that we try not to say, "Oops." Because we always want the patient to be in charge. And as long as we're adhering to their wishes and respecting that, that's what we're trying to do. I think it comes down to the notion of, If time is short, where do you want to spend it? And perhaps more importantly, how do you want to spend it? 

Melanie Cavazos And who do you want to spend it with? 

Ryan Huey, M.D. That's exactly right. You know, I think that it goes without saying that the environments at home or in the hospital are very different, both in what the day-to-day looks like and who's allowed in and all kinds of things. And the hospital is very foreign to people, and it doesn't mean it's the wrong choice for everyone, certainly, but there are reasons that patients say, "Look, I don't want to be in the hospital at the end of my life." These conversations can overwhelm people. You do a great job at helping guide patients through and families through them. So, how do you suggest that they get started? 

Melanie Cavazos Yeah. Well, and I think you know, you mentioned it's so much easier to have these conversations sometimes earlier on, you know, when we're not in a crisis decision-making moment. Maybe it's less emotionally distressful for a patient or family if we can start this earlier. And I think, you know, it's one of the wonderful things about working with your team is that I get to come in earlier and start these conversations instead of in that crisis moment where everybody's highly distressed. You know, I said before, one of the easiest ways to start it is just asking about the advance directive documents. That typically will lead to the conversation of, "No, you haven't done them? OK, well, let's talk about it. Who do you want to make medical decisions for you?" Sometimes, like you said, easy answer. They know exactly who it is. Other times, families are difficult. And so, that conversation tends to be a little more involved. But we want to make sure that whoever they choose and whoever they want to make those decisions is also involved in the conversation. Because it's great if someone says, "Oh, I want my sister to be my medical power of attorney." Fantastic. Have you talked to your sister? Does your sister know that you want her to make these decisions? And does she know what decisions to make? And a lot of times you get a look of, "Well, no, why would I tell her these things?" So, it's important to bring kind of everybody together. We want the patient, we want their loved one, we want the doctor, the social worker, the nurse, the APP. We want everybody involved because we're all part of the team. It's not, the patient's in charge, and we are all there to support them. And so, once you can kind of bring those together, then you want to start off with, you know, "What makes your life worth living? And what kind of trade-offs are you willing to make when it comes to your treatment?" Because reality is: we may have to make some trade-offs. And so, getting people to start thinking about, you know, is it most important for you to be able to get up and do all of your activities of daily living every day without any assistance? Is it most for you to be able make all of your decisions? Maybe you have one event or a couple of events that you really, really want to attend. And so, our goal is to get you to those events. And starting that conversation of, what are we here for? Why are you here? What are we doing this for? What's your reason? And that opens up into a lot of conversation about what kind of goals they have for their health care. And you mentioned it earlier, there is no right or wrong answer, right? This is a very individualized conversation and care plan. And so, it has to come from the patient. And I'm sure you've been in, a part of conversations where maybe there's some conflict between what a patient is saying that they want versus what their loved one is wanting for them. And those, you know, those conversations can be tricky. Sometimes a lot of people can feel really stuck in those moments of how do we move forward from here? What do we do? How do you handle those conversations? What do you tell those patients and those families when they're feeling really discouraged by having these conversations? 

Ryan Huey, M.D. Yeah, you bring up the really good point of sometimes people aren't on the same page and understandably so. I think different people can grieve a serious illness and a cancer diagnosis very differently. I think one thing that we see is. It's great to have a big network of support. 

Melanie Cavazos Right. 

Ryan Huey, M.D. There's no doubt about it. But, I think the larger a network is, the more complicated the dynamics can be. Sometimes it's often more complicated by geography as well. So, the people who are maybe local to a patient are doing the caregiving on a day in and day out basis. And it's possible that someone else in the family lives further away or even if they don't live that much farther away, they're just less in the loop as to what's going on on the day-to-day. I think for patients, or the kind of, caregivers, this can come off as a notion of like, "You just don't know how sick she is." Or, "You don't understand all of the things that we've been through." And I think the caregiver can have this sort of shared experience of that. But families oftentimes aren't on the same page. There's this term that I did not make up called "daughter from California syndrome," where a daughter comes in who's not been part of the day-to-day medical decision-making and is really upset at some of the decisions that the patient and/or other family members have made. Say they have acknowledged and come to terms with a patient is maybe closer to death and has made decisions to stop treatment or a variety of other things. Someone can come in, in this case, a daughter from California, or I think in California, they call it from New York, and say, "Hey, hey what's going on? Like, why have you guys made all these decisions? You know, dad's not dying, why are you saying that he is or why are we stopping treatment right now? 

Melanie Cavazos He's doing fine. 

Right, and I think to the people that are the direct caregivers, the primary caregivers, it can be very frustrating to talk to somebody who it feels like they just haven't been there the whole time or something like that. This can create a tremendous amount of conflict in families, and we see this frequently. And I think it's all the more reason to not only have conversations with families, but to try to write something down because then you have it as a reference. And I think you brought up earlier that it's great to include as many of these people in the conversations as possible so that they can remember why this piece of paper exists in the first place. 

Melanie Cavazos Yeah. But pick one, one decision maker. Because I think we see that too, where big families, "Oh, all of my children can decide. They all get along great." Well, they may all get a long great on a normal Tuesday, but do they all get alone great when mom or dad is severely ill and we're having really difficult conversations? Do they understand where we're at? Or is this daughter from California going to come in and change everything because we don't have a designated decision-maker. 

Ryan Huey, M.D. And this is not as simple as, well, there's five kids, well, three of them vote one way and two of them vote the other, that's just not how this works. And so, it's really important to try to get people on the same page as much as possible, because you're right, one person with a different understanding of the circumstances can really change the dynamics. And again, everyone has a different way to grieve with very challenging situations. But the more you can create consensus for family members and caregivers and all of the important people in somebody's life, the better. 

Melanie Cavazos Absolutely. 

Ryan Huey, M.D. And I think if we keep the patient at the center of things, things can fall into place a lot more easily. But, you know, if you are a patient's family member, it's your shared experience as well, to an extent. And that's, I think, really hard for people to grapple with and overcome. And it's understandable, it's very difficult. I think when people don't want to have these conversations at all, I try to tell them, "Look, it not about giving up, it's about being prepared." 

Melanie Cavazos Yeah. 

Ryan Huey, M.D. And I think what's really important is we can hope for the best, and we can be optimistic that treatment will work, and we be optimistic that you'll feel better, and that things will go really well. And still, we can have these conversations. We wanted to talk a little bit about some misconceptions that exist about advance care planning. I think one of them is something I hear all the time is, "I'm not sick enough for that. I don't think we need to talk about that yet." What do you say to that? 

Melanie Cavazos I tend to throw it a little personal when that comes up, and I say, "You know what? I've done mine. Nobody knows what's going to happen. You may not be sick enough in your terms, but advance care planning is for everybody, regardless if you have a cancer diagnosis, or maybe you just got married, or any sort of life event is a good time to have these conversations. It's not about your death." And I think that's an important distinction to make. A lot of people hear "advance care planning" and they think, oh, well, all we're going to talk about is how I'm going to die. But in reality, advance care plan is talking about how do you want to live? And so, that to me is the main distinction that I think we all can continue to talk about is, this is how we're going to live, not about how you're going to die. Another misconception that I've heard a lot is, "Well, I don't need to do that. My family already knows what I want." What would you say to that? 

Ryan Huey, M.D. Yeah, we hear that a lot. And I think especially among families that, that may be close, they may say that. To be honest, it's more of a deflection technique and understandably so because these are difficult conversations. What I tell people is, "Look, your family might know what you want and that may very true, but it's better to be clear. It's better to write things down and it's better to use that piece of paper as a communication technique to your medical team as well because then we can go to that, we can look at in the middle of the night if something unexpected happens, what you have said before. And because it may be that whoever that person is, they may not be around at that exact moment in time. Plenty of times that's not the case, but sometimes it is. And so, it's better to be clear. And so, this is really a communication technique. Whenever people fill out advance care planning documents, we put them in their medical record in a very specific place so that they're easily visible to anybody that needs to access them. And so, it's a way to communicate sort of, not just with the small group of people that you may or may not have had conversations with, but with everyone kind of, at large. Another thing that people talk about or that people think is if I have this conversation, if I talk about this, I'm giving up. 

Melanie Cavazos Yeah. We hear, and I hear that all the time. "I don't want to talk about this because I want to stay positive. I want to stay optimistic. If I have these conversations, it means I'm losing hope, I'm giving up, and I don't want to do that." And that's a completely understandable sentiment that they're feeling, right? And I think we all understand that. And so, trying to reframe it to the patient and their loved ones is that it's not about giving up. It's about being prepared. It's about taking control in a situation that you don't have control over. It's about planning for peace of mind, planning for those moments that we hope we don't get to, but that if we do get there, knowing that you've prepared, knowing you've put things in place, also knowing that by doing this, sometimes you can take the burden off of your family, is another piece that I like to say when people are hesitant to do it. They may not want to do it for themselves, but when you can frame, you know, by talking about this, by having these conversations, you're taking some burden off your family members to make those hard choices in the event they have to do that. I think it's just, it's a lot about how we have the conversation, how we frame it to people and starting where they are, right? They may not be ready and that's OK. But then we're going to come back and we're going to readdress it because it's one of those things that has to be talked about. 

Ryan Huey, M.D. And these conversations can change over time. 

Melanie Cavazos Absolutely. 

Ryan Huey, M.D. Right? I think that if I talk to somebody who has a very high likelihood that their cancer has been cured, I'm having a very different conversation about their future than someone who has an advanced cancer that is incurable or someone who is actively dying. 

Melanie Cavazos Yeah. 

Ryan Huey, M.D. And I think it's OK to acknowledge that those are dramatically different conversations. We're not asking this to be a one-size-fits-all approach. I think that it's important that what matters most to the patient stays central. For some patients, they say, "Look, I want a cure. I understand there are going to be a lot of side effects and I understand that I'm going to put my body through a lot, but I have the opportunity, my team has made it very clear that there is a good chance at cure and so those are things that I am willing to, those are my trade-offs that I'm willing to make. Whereas others, we'll have a conversation that looks a lot more like, "Look, my body is breaking down." And I'm worried, I may be worried that they are dying or to be perfectly honest, they may be worried that they're dying. And so, all of a sudden we're having a very different talk not about the side effects that you're kind of, willing to go through but how to alleviate suffering, and how to have those milestones be the benchmarks that we kind of stare at, the goals. How do I make it to this wedding? How do make it this graduation or other life event? Or how do I just have a little less pain on a day in and day out basis? And there's a lot there obviously, but I guess the point is, this is not a one-size-fits-all approach. 

Melanie Cavazos Yeah. 

Ryan Huey, M.D. We've discussed a lot. Could you maybe give some key takeaways from our conversation on advance care planning? 

Melanie Cavazos Yeah, um, you know, I think one of the most important things I would say is it's never too early to start having these conversations, um, that it's something, it's ongoing. Things can change. Your values can change, and that's completely fine. Whatever you say today may not be what you want six months from now or a year from now, which is why we have the conversation over and over and again, because we want to make sure that we know your goals, we know you values, we know who's there to support you because we want to engage them in those conversations as well. And just really the acknowledgement that these are really scary, difficult, emotional conversations, but they're so necessary and they're incredibly important to have, and that we as their health care team are here to help them with that. We're here to support them in those conversations, and we're here to help figure that out, and it's an ongoing thing. 

Ryan Huey, M.D. Thanks, Melanie, for joining me today. It was a great discussion. And thank you for listening to the Cancerwise Podcast from MD Anderson. If you enjoyed this episode, don't forget to follow or subscribe on Apple Podcasts, Spotify, YouTube, or wherever you get your podcasts. And be sure to comment or review. For more information or to request an appointment at MD Anderson, call 877-632-6789 or visit MDAnderson.org.