Name:
Goals of Care Conversations
Description:
Goals of Care Conversations
Thumbnail URL:
https://cadmoremediastorage.blob.core.windows.net/80aec111-588f-4d18-a804-4a261b070ba2/thumbnails/80aec111-588f-4d18-a804-4a261b070ba2.jpg?sv=2019-02-02&sr=c&sig=Ej2%2BG75GTybQpJefimfke4DN1KFqxjYsTZxTi18iv7U%3D&st=2024-05-04T17%3A30%3A18Z&se=2024-05-04T21%3A35%3A18Z&sp=r
Duration:
T00H28M57S
Embed URL:
https://stream.cadmore.media/player/80aec111-588f-4d18-a804-4a261b070ba2
Content URL:
https://cadmoreoriginalmedia.blob.core.windows.net/80aec111-588f-4d18-a804-4a261b070ba2/RTL-20Ep2061-20Goals20of20Care20Conversations2028no20ep20232.mp3?sv=2019-02-02&sr=c&sig=fgu13uk7pHcgAlbizPENbsnKLpfIuIomA%2FQp8S0Jh2A%3D&st=2024-05-04T17%3A30%3A18Z&se=2024-05-04T19%3A35%3A18Z&sp=r
Upload Date:
2022-09-15T00:00:00.0000000
Transcript:
Language: EN.
Segment:0 .
DR. SMITH: Welcome back to Run the List, a medical education podcast in partnership with McGraw Hill Medical. Our hosts are Dr. Navin Kumar, Dr. Walker Redd, Dr. Emily Gutowski, Dr. Joyce Zhou and myself, Blake Smith. As a quick disclaimer, this podcast is meant for informational and educational purposes only, and should not be understood as medical advice under any circumstances.
DR. SMITH: [intro music] [intro music] [intro music]
DR. ZHOU: Welcome to another episode of Run the List. Today, we'll be diving into what I think is one of the most important areas in the practice of medicine, goals of care conversations. We're really thrilled to have Dr. Andy Lawton as our guest expert to share his wisdom today. He's a palliative care physician at Dana-Farber Cancer Institute, as well as director of communication skills education in their Department of Psychosocial Oncology and Palliative Care.
DR. ZHOU: He's also really involved in medical education within the Brigham and Women's Hospital internal medicine residency. Dr. Lawton, thanks so much for being here with us. [Dr. Lawton] Joyce, thanks for having me, I've listened, I've heard so many great things about Run the List, really glad to be joining you guys today.
DR. ZHOU: That's really kind, we're really, really excited to have you. So before we dive into a case, I think it's important in this particular episode that we're all on the same page about some key terms. So when we refer to this idea of goals of care conversations, what do we actually mean? How does it fit into some of these other terms such as advanced care planning, MOSTs or POLSTs, as well as this idea of determining code statuses?
DR. ZHOU: [Dr. Lawton] Absolutely. So, Joyce, what we mean by a goals of care conversation, is really just a conversation that explores patients' values and concerns in order to guide the treatment plan that we're going to make. And so really the intent is to create a plan of care that aligns with those values that we elicit from the patient, what matters most to them. We typically have these conversations with seriously ill patients, and that may occur early in the disease course when the diagnosis is new, when things are stable and we're just thinking about the future together, or later in the disease, when things are changing and advancing in some way.
DR. ZHOU: We often have goals of care conversations as well when we're facing a treatment decision and that might be things like, whether to pursue more chemotherapy or whether interventions like dialysis make sense for a given patient. And in some cases though, these conversations can be particularly urgent, especially if the decision we need to make is right in front of us, such as, for example, deciding about intubation for someone who's sick and in the hospital.
DR. ZHOU: And I agree with you, Joyce, there's a lot of different terms. Goals of care conversations are really one part of this broader work that we call advanced care planning, which includes actually having the conversations themselves, as well as documenting the patient's wishes on forms like a health care proxy form, a MOST form, as you mentioned, or advanced directives.
DR. ZHOU: That's super helpful, thanks for clarifying. So what it sounds like is that the goals of care conversations are really in its essence about understanding the values of our patients and their wishes, and really understanding this idea of what matters most to them, which I love. So with that, let's dive into a case now. So I will tell you about Mr. R and he is a 44-year-old male with a past medical history that's significant for hypertension and alcohol use disorder.
DR. ZHOU: He comes to his primary care physician for a follow-up after a recent hospitalization where he presented with subacute fatigue and abdominal swelling and he was diagnosed with decompensated alcohol-related cirrhosis. When preparing for this follow-up visit, his primary care physician realizes that he hasn't yet had any conversations with Mr. R about his goals of care, as this was really his first hospitalization in his life and the primary care physician hopes to get that conversation started today.
DR. ZHOU: So Dr. Lawton, let's now step into this primary care physician's shoes. Do you have a general approach to having effective goals of care conversations and how might it maybe relate to Mr. R's case here? [Dr. Lawton] Absolutely. So, you know, first of all, I want to applaud you, Joyce, for suggesting that we have a framework. I think more and more, we're trying to think about communication skills and difficult conversations as in fact, a medical procedure.
DR. ZHOU: And just like any other procedure that you and I would do, we want to have an approach, we want to have a framework going in and that's going to allow us to be more successful. The framework I use to navigate goals of care conversations is called REMAP, and this is a five-step framework or what we often call a talking map for navigating goals of care conversations, and this was developed by the communication experts at VitalTalk.
DR. ZHOU: And I'll just kind of overview each of the five steps here and perhaps we can get into them in a bit more detail. The first step is what we call reframing, which is really just getting everyone involved on the same page about the fact that our patient, their health or this illness that they have has changed in some important way and we need to talk about it. And reframing the situation involves a couple of steps. First, I need to ask the patient and family, what they understand about the illness.
DR. ZHOU: Asking for understanding is really the key first step to almost any goals of care conversation. So asking their understanding, what have they already heard from other doctors, from other clinicians about this illness? If there's a key piece of information that they don't have, but they need in order for us to have an effective conversation, then I need to tell them that information.
DR. ZHOU: The second step in our framework is expecting and responding to emotion. And this is really a key important step throughout a goals of care conversation, but especially after we reframe the situation, because if patients and families heard and took in what we had to say about the seriousness of the situation, about the things that we're worried about as the clinicians, then we would expect that patients and families would become emotional, and the way we respond to emotion is we use empathy.
DR. ZHOU: We use empathic statements to respond and help the patient and family feel heard. What's really important here, and in fact, Joyce, I would say, if folks take away nothing else from our episode today, I hope they take away this idea that expecting and responding empathically to emotion that comes up during a goals of care conversation is probably the most important skill of any that you and I could talk about.
DR. ZHOU: Really briefly, I would say the reason this is so important is because if you and I think about when we're emotional, it often kind of overwhelms our ability to think concretely about what to do next. We often say, emotion, overwhelms cognition. So if we can make space for the emotion, help patients and families feel heard and drop the emotional temperature in the room, then not only will patients and families feel aligned with, but we'll actually be in a place where we can move forward together in the conversation.
DR. ZHOU: So it often really helps us kind of unlock the conversation and move forward. Once we've made space for the emotion, then we're going to move on to the third step of our REMAP framework which is called mapping values. And this is really a key step because what we're going to do here is pause, and before we get into the details about specific treatments that you know, doing option A, option B, chemo, no chemo, dialysis, no dialysis, we're not going to get into that right away, we're going to pause and explore, what's important to this patient and family?
DR. ZHOU: What concerns do they have? And we're going to map out the values using what we call mapping questions. So as you look forward to the future, what feels important? What do you hope to be able to do? As you think about your health, what worries do you have? And we're going to listen for hopefully a variety of things that are important to the patient and family, and we're going to end up using those values to guide the plan that we make.
DR. ZHOU: The fourth step is going to be aligning with patient's values, summarizing and reflecting back the things that we heard them say when we were asking about what's important, when we were asking about what they're worried about, and make sure we heard them right. The last step then, Joyce, is going to be making a plan, planning treatments that match those values that we heard. And this is really the skill of making recommendations that incorporate both the values that we heard and the medical reality of the situation we're in now.
DR. ZHOU: So five steps, reframing the situation, we got to be on the same page throughout the conversation, expecting and responding to emotion, mapping values before we get into treatments, aligning with those values, and then making a plan, making recommendations that uphold the values that we heard.
DR. ZHOU: Great. This is incredible. So I think this REMAP framework can be a really good way to walk into a room or talk to a patient with this approach in mind. So let's go back to this PCP of Mr. R's. So he does exactly this, he follows a framework such as REMAP, and he has this conversation during which he's struck by how strongly motivated Mr. R is to stop drinking and how he wants to reset his life so that he can see his two high school children graduate.
DR. ZHOU: Mr. R actually completes a MOST form that documents that he wants to be full code during this conversation. And he leaves the office on both pharmacologic and psychosocial treatment for alcohol use disorder. He's followed up closely by his gastroenterologist, he's put in touch with transplant hepatology, and he does all the medical things that we won't dive into here. So nine months later, Mr. R presents to ED with hematemesis.
DR. ZHOU: He's hypotensive, he requires two units of red blood cells, and he undergoes an emergent endoscopic treatment of a variceal bleed. He requires a brief ICU stay and is ultimately transferred to the floor where he stays because of a tenuous volume status. His wife comes into visit him and they ask to check in with the team about next steps. So now I want to step back for a second without getting too much into, again, the medical details of this case, Mr. R's liver disease has now taken a turn for the worse.
DR. ZHOU: So you decide that you want to use this opportunity in the hospital to revisit his goals of care. How can REMAP apply more specifically here in what might be considered to be a later conversation when a patient has become very sick and there may be a change in urgency? [Dr. Lawton] Sure, Joyce. So, you know, as you say, Mr. R is certainly sicker now, and I think most of us would call this a late goals of care conversation, meaning that we're having the conversation in the context of the illness progressing as it is sort of more quickly now, versus months back when we were in the clinic, the diagnosis was new, things were stable, we often call that an early goals of care conversation.
DR. ZHOU: And back then we might have done the work of moving through those R-E-M-A-P, the REMAP steps over multiple visits, over multiple conversations, but things are different now, they're more urgent now, and we're going to revisit where we're at with the goals of care. And part of the work that we need to do now is really make sure that we're still on the same page with Mr. R and his wife about how things have changed.
DR. ZHOU: We want to talk, you know, compassionately and honestly, openly about the fact that the liver disease has worsened and there's a real possibility he could continue to get sicker. Again, the key part there is all going to be in that reframing, that first step of our framework, and doing this important work of reframing how things are different now is going to allow us to revisit his goals and values, really with a shared understanding of the new place that we're in, so that we can make a good plan together about what kinds of treatments are going to be helpful to Mr. R at this point, and what kinds of treatments may not be as helpful at this point.
DR. ZHOU: Great. So for me, as well as for our listeners, I think sample language can sometimes be very helpful. I think that actually saying the words can be very challenging and when we try to have these conversations, we can sometimes just beat around the bush. So can you give us some words of how you can actually go through all of these steps with Mr. R? [Dr. Lawton] Absolutely.
DR. ZHOU: So I'd start by reframing, that's, again, our first step. I'd probably ask, you know, "What have you heard about what's going on here in the hospital? What have you heard or taken away from your conversations with the other doctors?" And listening for do they understand what's different now? Do they understand the seriousness of the situation?
DR. ZHOU: If there's key information that they don't have but that they need in order for us to have an effective conversation, I want to tell them that, and I'm going to use that information headline again, that key information that they need to know for us to move forward. So that might be something like, "Mr. R, you know, I'm worried that you're getting sicker overall as a result of the liver disease and I hope we'll see things improve, and also there's a real chance that things could continue to get worse.
DR. ZHOU: And I really think we're in a different place now with the liver and your overall health than we were nine months ago." And then we're going to pause and see what reaction he and his wife may have, and again, we're expecting and going to be ready to respond to emotion at that point. "This must be overwhelming. You know, I can only imagine how hard this is to hear." You know, naming and acknowledging or understanding the emotion at that point.
DR. ZHOU: We might say, you know, "I really wish things were different. I really wish this wasn't the situation we were in today." That "I wish" statement can be so partnering. After we've had time to express that empathy, use those empathic statements and sit with the emotion, then at some point I'd ask Mr. R, you know, "Given what we've talked about in this new place that we're in, I wonder if we could spend some time thinking about where we go from here." And I'd ask him for permission to kind of move the conversation forward and we would move into that third step of the REMAP framework, mapping values.
DR. ZHOU: And I'd ask him, you know, "Given what we've discussed, what feels important moving forward? If time were shorter than we hope, what worries might you have? And what else are you hoping for? What else feels important? What else worries you?" Joyce, one of the things we often find is that, patients and families don't necessarily share with us the more deeply held concerns that they have, or the values that they have right away and we often have to ask several of these mapping questions in order to get a strong sense of what really is important to this patient and family.
DR. ZHOU: We might hear things about having meaningful time with loved ones naturally, right? Like that's something a lot of us care about. It might be about being at home, it might be about being outside and being as independent as he can be. Whatever it is, we want to make space for what those important values are. The fourth step then is going to be to align with the values that we heard.
DR. ZHOU: And again, that's summarizing and reflecting back. "You know, Mr. R, what I hear is that staying active, having time with your family, being as independent as you can be are really some of the most important things and I also hear that you're worried about your wife and how she might handle all of this, how she might handle taking care of you, if you really needed extra help. Do I have that right?" Checking in, making sure he knows I was listening, he can add other things, and then I would end the conversation by making a plan, making recommendations that pull together what I heard as the important values and what I know about the medical reality of the situation that we're in.
DR. ZHOU: That might sound something like, "Mr. R, given what you've shared with me, and given what I know about this condition, I'd recommend a few things. That we focus on medications and treatments for the liver disease that ideally will help you feel as well as you can, and have that good time with your family that we want, and I'm hopeful that we can do that.
DR. ZHOU: At the same time if you're getting sicker, I think we should avoid things that aren't likely to get you that good quality time that we're all hoping for. And that would include things like a breathing tube or CPR. I'm really worried that if you were that sick, that those things wouldn't help, it might only cause you to struggle." And really, Joyce, we're ending the conversation with recommendations there, starting with the things that we do recommend and then in this example, following up with things that we don't think would be helpful at this point, including a recommendation about code status.
DR. ZHOU: Wonderful. This is super, super helpful. I think the two things that really struck me was one, when you were talking about reframing, I think you said something along the lines of, I hope we see that things improve, and also there's a very real chance that you may continue to get worse, that you use and instead of but, I think this is something that I've noticed that you can have both of them at the same time. And I think the second thing was, when you talked about this plan to start with something that we would do before we dive into the things that we recommend not doing.
DR. ZHOU: And I think that oftentimes probably leaves patients feeling a little better than talking about all the things we do not recommend. So I want to talk about this idea of prognosis, because I think that figures into how we have some of these conversations. Do you have any tips on how to broach prognoses? [Dr. Lawton] Absolutely, Joyce. So I think you and I could probably book a whole separate episode just to talk about prognosis, but let me share a few thoughts about that.
DR. ZHOU: I often ask patients how much they want to know and what kind of information they want in terms of prognosis before I start giving information, because people can mean different things when we start to get into the prognosis space. Some people want to know about time in the way that we typically think about prognosis, but other people may want to know about other things.
DR. ZHOU: Maybe it's about how they're likely to feel or how functional they're likely to be, what kinds of things they'll still be able to do over time. And maybe other people want to know about, are they going to make it to a certain life event. So at first, try to pause and ask, what kind of information would be helpful? And then, when we're actually getting into sharing information that "I hope," and "I worry" language again, can be really helpful.
DR. ZHOU: So maybe for Mr. R it might sound something like, you know, "Mr. R, I really hope that we have a long time, even years, and also I worry that some patients with this liver disease can get sicker quickly. And it's possible that time will be shorter than we hope."
DR. ZHOU: Thanks for some of these thoughts. I think prognosis tends to be a very hard thing to talk about, particularly when we don't have a very good sense of timeline. I now wanted to zoom in on the proposing a plan step, because I think there's a component here that gets at the heart of medicine. How do you balance ethically, giving a general recommendation, such as I think you should continue treatment, I think you should stay full code based on some of your values, which for some people can be seen as very paternalistic, and balance that with giving patients the ability to choose from a menu of options and all these different scenarios, which may foreground patient autonomy over specific choices?
DR. ZHOU: How do you balance those two aspects? [Dr. Lawton] Joyce, this is such an important question. And I would say a few things. Many of us are taught, I think in medicine or it's modeled for us that we should, as you say, present patients with a sort of variety of options, and then allow them to decide sort of what feels right for them.
DR. ZHOU: I think many of us have seen clinicians do that. And while that certainly comes from a well-intended place, I think this idea of presenting a menu of options often ends up being pretty challenging for patients and families. Most patients don't have the medical background to weigh the complexities, the nuances of decisions about being in the ICU or dialysis or chemotherapy, and furthermore, we want to remember that we're often talking with patients and families about these decisions during some of the most stressful, emotional moments in their lives, which really makes it even harder for folks to weigh these decisions and weigh options.
DR. ZHOU: And really most often patients and families are looking for our guidance. And I see it as my job to give them that guidance wherever possible, to make recommendations to them. This is so, so important. I, of course, want the patient's and family's input, and I'm going to ask for that, but I give my recommendations first. Making recommendations, Joyce, is just so important, and frankly, it can be really a gift to patients and families.
DR. ZHOU: You know, one story comes to mind from my own training. I'll always remember talking to this mother of a patient I was caring for during my residency. And this young gentleman was declining pretty quickly and as a team, we were worried that he may die even very soon. And after exploring their goals and values, we made a recommendation to this patient's mother against going back to the ICU, against being re-intubated.
DR. ZHOU: And she looked at us and she said, "Thank you. You have no idea what this means to me." And Joyce, I was so struck by that reaction from her, it's really something that stays with me. And it was clear that what she meant was that, she was relieved of the fact that she wouldn't have to carry the weight of having to have made that decision with her forever. She could hold the narrative of, "I just followed the doctor's guidance, I just did what the doctors recommended that I do." And that was so powerful.
DR. ZHOU: So making recommendations can be so helpful, so valuable to our patients and families.
DR. ZHOU: Thanks so much for sharing that story. I think it really strikes a chord with those family members who feel guilt for withdrawing care and having permission from their doctors to do less rather than more can be really liberating sometimes. So I want to turn towards now cases in the ICU, for instance, where patients are really, really sick and their families are seeing them every day and they feel very strongly that the length of time that they live and even, hope of the smallest chance is really important.
DR. ZHOU: So in cases like these, I think sometimes we consider recommending time-limited trials for intensive or aggressive interventions. Can you define time-limited trials and tell us a little bit more about your thoughts around this? [Dr. Lawton] Sure, Joyce. And just to say, I think, you know, the example you're giving in the ICU, really sick patient, family that is hoping that what we would consider to be more intensive or aggressive interventions, are going to be continued.
DR. ZHOU: I think this really gets to the heart of what's challenging about these conversations. Specifically with regard to time-limited trials, I agree, I think this can be a really valuable tool and concept to bring into our practice. So with a time-limited trial, we establish that we're going to try a given intervention for a defined period of time to see if it's helpful. And we set upfront how long the trial will be and what improvement would actually look like for us, what parameters we'll use to monitor for improvement.
DR. ZHOU: If the patient does improve and is tolerating the treatment, then we would continue it and we'll make that clear to the patient and/or the family. And if it's not helping or the patient isn't tolerating the treatment or improving, then we'll discuss stopping it. And so what might recommendation language sound like that incorporates this idea of a time-limited trial? Well, maybe it's something like, you know, "It sounds like your dad would do most anything for the sake of more time with his family.
DR. ZHOU: I really hear that. Given that, I'd recommend that we try another 48 hours on the breathing machine to see if he might improve and if he's getting better, that's wonderful. And if he's not improving or if he's getting sicker, we can discuss how we would continue to care for him, even if he can't recover." So again, Joyce, that's some of the language I might use, and I really agree with you that that time-limited trial concept can be a really helpful one.
DR. ZHOU: I think that's a super helpful final point to be clear about what we're talking about when we talk about timing or timeline, to be very clear that even if things don't go the way that we hope, that we're still going to intervene in ways that are supportive. So the final question that I wanted to ask is about troubleshooting. So I know sometimes conversations can get into a place where we're really kind of feeling stuck.
DR. ZHOU: The conversation might be going in circles, we're not moving forward, how do you think about getting stuck? In other words, what's your differential when we're getting stuck during these conversations? [Dr. Lawton] Yeah. So I think, Joyce, that high on our differential for why we feel stuck in conversations, really has to be the idea of am I missing emotion, am I missing an emotional cue in the room from the patient and family?
DR. ZHOU: So what's notable here is, if we think about places where we feel stuck, many times patients and families may be asking questions or making statements that can sound like their requests for more information, when actually they're an expression of emotion. An example might be when a patient or family says, you know, "There's got to be another treatment you can try, there's got to be something more you can do." We might think to ourselves, you know, "Why are they not hearing us?
DR. ZHOU: We already talked about the fact that we've tried so many different treatments for this cancer, we don't have another one." But we can also ask ourselves, is this really a cognitive question? Are they really asking for more information about treatments or might this be an emotional statement? And what emotions might be at play here? Is it fear? Is it sadness?
DR. ZHOU: Is it anger? And so often why we're stuck is because we might not be making the space that we need to for the emotion that's already in the room. And as we've talked about, what we want to do here is be really ready to respond empathically. And when we respond empathically to emotion, we often start to see a shift in the conversation and it's often what sort of unlocks that stuck point and helps us move forward, because really these stuck points are often less about the details of the medical scenario and often more about the experience of being ill, the experience of feeling powerless, you know, the fear of losing a loved one.
DR. ZHOU: And what we want to do is really instead, lean into that emotion. And if we can tap into it, we can actually start to partner with the patient and family and be aligned with them and start to think together about where we go next. And just to say, Joyce, I think that feeling of being aligned and connected with patients and families, that's the kind of experience that drew many of us into medicine to begin with, and it's the kind of feeling that keeps many of us going in this work as well.
DR. ZHOU: I agree. I think some of these conversations can be very, while serious, there's an element of connecting with people in this deep way that can be very meaningful. I want to turn back to Mr. R now. So the inpatient team actually had a series of very productive conversations with Mr. R and his wife, and they decided that they still wanted him to be full code. They really wanted everything done for him. This was in the context of Mr. R feeling like he had started to turn his life around at the face of a potentially very severe condition.
DR. ZHOU: Three days later in the hospital, the nurse actually called the code when she found him unresponsive and pulseless with vomited blood on the floor. CPR was performed according to his wishes, but was unsuccessful. While his family was very devastated about his death, his wife later told the team that she was really appreciative that they "did everything," and she was really grateful for their care in the hospital.
DR. ZHOU: So unfortunately here, the patient ended up passing away during the stay, but they were able to have some key conversations to make sure they were respecting his choices about how to live when he was very sick. So as we wrap up, I wondered if you had any key takeaways that you wanted our listeners to walk away with from this episode.
DR. ZHOU: [Dr. Lawton] Sure. Well, I would say a couple things. First is that our REMAP framework can be an incredibly valuable five-step tool for discussing goals of care, and I would encourage folks to read more about this and try it in their own practice. Second is that, looking for and responding to emotion is really essential to any effective goals of care conversation, and it's often the key to getting unstuck in these conversations as well.
DR. ZHOU: And lastly, Joyce, I would say that whenever possible, we want to provide patients and families with recommendations, again, that are informed by their values that we've elicited and our knowledge and expertise about the medical situation.
DR. ZHOU: Wonderful. This was super, super helpful for me, I hope that this was helpful for our listeners as well. So thank you so much for your time for sharing with us how to have effective goals of care conversations. [Dr. Lawton] Thanks so much for having me. [outro music] [outro music]