Discussing Your Goals of Care With Your Health Care Team, with Lalan Wilfong, MD, and Lydia Mills, MSW, LCSW, LICSW

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In this Meaningful Conversations podcast, Dr. Lalan Wilfong talks with social worker Lydia Mills about what people with cancer should know when discussing their goals of care with their health care team, including the ways it can help inform their treatment plan and tips for navigating the conversation. Meaningful Conversations is a Cancer.Net blog and podcast series that describes the important discussions people may need to have with their providers, caregivers, and loved ones during cancer and offers ways to help navigate these conversations. Dr. Wilfong is a medical oncologist and the senior vice president of payer and care transformation at the U.S. Oncology Network. He is also a member of the 2023 Cancer.Net Editorial Board. Ms. Mills is a licensed clinical social worker and the senior manager of supportive care services at the U.S. Oncology Network.  View disclosures for Dr. Wilfong and Ms. Mills at Cancer.Net. Dr. Wilfong: Hi, I'm Dr. Lalan Wilfong, Senior Vice President of Payer and Care Transformation for the U.S. Oncology Network. And today we're going to be talking about goals of care. Lydia, can you introduce yourself? Lydia Mills: Yeah, sure. I'm Lydia Mills, Senior Manager, Supportive Care Services. I work with practices across the U.S. Oncology Network, and I am a licensed clinical social worker. Dr. Wilfong: So Lydia, what does it mean when we talk about goals of care during cancer? Lydia Mills: Well, I think a lot of people think about what treatment is going to look like, what that prognosis is going to look like, what that end goal is going to be when they're having their treatment. I think it can be a lot broader than that. In fact, I've had some people say, “What do you mean by goals of care?” So I think it's really important to bring in, I think, the patient perspective when we're talking about this and what's important for them in addition to maybe what that cancer treatment is going to do for them physically, but also what is important to them as far as what do they want to work, are there things they want to accomplish, are there things they want to get done, are there things they want to do or see? As well as, you know, often the goal quote is to be cured, and we know that's not always the case. So what are some other things that they might want to accomplish? And, you know, I don't know from your perspective from a physician, but that's kind of what I saw with social work is kind of more what's really important to them. Dr. Wilfong: Yeah, it's so important for people undergoing treatment for cancer to have an understanding of what they're going through. I've seen patients all the time, you know, at the end of life, look at me and go, “I wish I would have made a different decision.” And that's always super hard as a physician to realize that you didn't take the time to fully understand what a patient wanted. And they went through something that they made a different decision about if they had known better. And so I think it's so important to talk about that with patients so they truly understand what treatment they're getting, what the impact of that is on their quality of life, what the duration of improvement and survival and things is. Because like you mentioned, a lot of people take therapy thinking that they're going to be cured, and we know that's not going to be the case many times. So they can really understand and make sure that they're doing things that are appropriate for them, and that are aligned with what they really want to accomplish for the time of life that they have. So it is super important about that. Any other things that you think of that are important around the goals of care for people with cancer? Lydia Mills: Well, you know, I think a lot of times when people start thinking about, well, I need to really think about getting quote things in order, right? They often think more of the financial piece. What am I going to do with my assets? They don't always stop to think about family members, relationships. Even, gosh, it's really important that we take that family trip in 6 months. You know, sometimes they just don't even always think about all those things. So I know I would always try to bring that into perspective as well, that it's not always just about, you know, the treatment and what that's going to look like and your financial aspect. But what are a lot of these other things that are important to you, your family, and your loved ones? Dr. Wilfong: I know so many times people have these life events that they want to make sure that they are at, whether that's a wedding or a birth of a child or things. And being able to plan appropriately for that is so important. I just remember a story I heard from one of my physician colleagues recently where a patient who had a terminal illness was going to get married, and they really wanted to get married is a big thing, and they kept putting it off and putting it off. And finally, she convinced them to actually get married. And the spouse, after the patient had died, was so appreciative of the physician pushing them to get that done because it meant the world to him and to her to have that actual wedding event. And so just things like that are so important for patients to understand and so they can plan for their lives. So Lydia, when do you think these conversations should take place? Lydia Mills: I honestly think the earlier the better. I mean, I think sometimes people want to wait and kind of see how things are going. And there might be an initial discussion when they're first diagnosed and treatment first starts. But I really think the earlier you can start talking about this and then keep checking in with the patient. And I would encourage patients to let those physicians know, like, hey, I really want to do this trip, or I really need to make it to graduation, whatever that might be, because depending on what that trajectory looks like, things change so frequently, or they can. And so, if you have kind of set milestones in your head of when to have the conversation, that may not always work for the planning for the patient and their family. Dr. Wilfong: I completely agree. I think early and often is a phrase I like to use. And it changes, like you mentioned. I mean, people with cancer undergoing therapy, things change, their life changes. And so making sure that you're always going back to my aligning the treatment that we're giving to their goals of care is so important because it changes all the time. And I think that's one thing that we get hung up on, especially as physicians. We think these conversations have to be this long, drawn out, hour to hour long discussion with patients, which there's a role and a time for that. But many times, it's just that simple check-in of, are we still on the right track? Has anything changed with you that we need to address and make sure that we stay on top of that? When we're having these conversations with patients, what typically is discussed? I mean, what do you think the main topics that a patient should expect to discuss during one of these? Lydia Mills: Yeah, well, I mean, I think, and you can chime in from a physician perspective, but I think a lot of times it is, you know, what is this treatment going to look like? How is it going to affect you? Of course people often want to know about prognosis. Again, I think it's important to expand on that and find out, you know, what is important to the patient. If you're going to be on treatment for, you know, 6-plus months or longer, tell me what do you have going on? Do you have things scheduled? I think people are afraid often to interrupt their treatment so they don't want to talk about what's important to them. They want to make sure they're there every single treatment visit versus, you know, I really did have this trip planned or there's a life event occurring. They can usually take a break if the physician knows, right? So I think it can be a variety of things, but you know, definitely what it might look like in the next few months and sometimes it's hard to go beyond that, which I think brings in the why it's important to have these conversations frequently. Dr. Wilfong: I agree. And I see so many times people don't want to talk about this stuff for themselves. It is so important for us to understand really what is important to them so we can give them the right therapy. And I would say I think people need to bring their open and honest self to these conversations so that the things that may be bugging you in the back of your mind, we want to make sure we get those out there and talk about them because I can't help you unless I know what's going on with you. So I think that's really important as well. These are hard discussions. I mean people are having to open themselves up, which is hard for a lot of people to do, to really talk about your goals, your fears. Lydia, how do patients come and bring themselves to these conversations? What can they do to prepare so that they're ready to have these? Lydia Mills: Yeah, you know, I think it's really important. You know, a lot of times patients, like I mentioned, they're used to talking about how they're doing physically, their pain, their nausea. They're not always used to bringing up, oh, and by the way, this is what's important to me. So I think even just writing a list. I encourage people to keep it brief and concise, but have some bullet points to help you remember, and saying, gosh, thank you so much for telling me what this is going to impact. I want you to know that, you know, whatever it might be, I have this event coming up, or I would really like to take a break so I could spend a week at the beach with my family, or whatever that might be. Making those bullet points if you have questions, concerns, anything that you want to know, but make it brief, concise, and to the point. You may not get through everything that visit, but you know, at least the provider knows, and you can kind of preface it with saying, hey, I have a couple things I'd like to talk about today. It's always okay to say that. I just think sometimes patients are, like you said, they're a little hesitant to do that. Dr. Wilfong: Yeah, no, I know it's—you go into the doctor's office, your mind goes blank. And so definitely having a list, writing things down, thinking through that ahead of time is important. And I know as a physician, many times, I'll broach a topic with a patient, they may not be ready that day. And I think it's important for us to, as the health care team, to make sure that we know the next time you come in, I really want to talk about these things so that they can have some time to prepare. Which brings me to, you know, what is the role of caregivers and loved ones in these conversations? Should they come, should they not come? Should you talk to your family? What do you think? Lydia Mills: Ideally, if you're able to bring someone with you, now I know with the pandemic, some of that's changed a little bit, but it's great if you can bring at least somebody with you so that you can have other eyes and ears. And honestly, I think for that loved one, the family, the caregiver, at that point, maybe to ask some clarifying questions, but really to sit back and listen, hear what that patient has to say. It's not really a time to interject what you think and what your hopes are, it's really a time for the patient to be able to share with their loved one and the physician, like this is what is important to me. And so I always encourage the loved ones to be there, but so that they can hear and, you know, be able to better understand. Dr. Wilfong: And I can't tell you how many times patients have told me they're doing something because of their loved one. When you actually talk about it with the loved one, there's a disconnect there because they're not talking about the stuff at home. And just having those conversations and having the team help facilitate some of those conversations sometimes helps the loved ones be able to come together better because, you know, I don't know about y'all, but my wife and I, very commonly we have different thoughts about things, but we never actually say we have different thoughts until it leads to some sort of conflict. I don't know what that says about me and my marriage, but hopefully I'm not the only one that does that. But it's very similar, and especially in a time like this, which is so stressful to get that alignment together. Because people tend to be more aligned than they think, and they make assumptions about the other person that until you have those conversations will remain assumptions. You may not be on the same page. Speaking of that, who in the health care team typically is involved in these conversations, Lydia? Lydia Mills: The first thought people often think, you know, the physicians, maybe that advanced practice provider, if it's a nurse practitioner, physician assistant. But as a social worker, clinical social worker, I was involved in these conversations a lot and helping to facilitate not only between the patient and their loved ones, but with the providers as well. But, you know, I think sometimes people aren't necessarily, they don't really think that they're involved in these conversations, but I always encourage the whole health care team to be aware and to listen, because nurses, the infusion room, on triage, medical assistants, even the lab, patients share a lot of things. They get to know these people well, and they'll share a lot, and that's a good time to say, gosh, have you mentioned this or talked about this with your provider? Encourage that conversation. So I think in some ways, the whole health care team can be involved in these conversations. Dr. Wilfong: You're right. When I started down on oncology many years ago, I always felt like I had to do everything myself, that I was the physician, it was my responsibility to manage all this myself. But I learned very quickly, thankfully had a very good care team that surrounded me and the patients, realizing that everybody had different skillsets. My skillset as a physician was managing the cancer, managing symptoms, you know, really understanding prognosis and things like that, whereas the care team was so much more skilled at helping with some of the other things that I'm not skilled about. Like social workers is a great example, Lydia. Can you talk a little bit about what social workers actually bring to this conversation? Lydia Mills: People are often, when they come to the office, they're used to talking about their physical side effects and symptoms. And it's a great opportunity to say, but how are you feeling about this? You know, emotionally, tell me what is going on with your thought process here. And that's often where you start hearing about, you know, I'm afraid to leave my loved ones, I worry, I don't want to be a burden. You know, I have this important life event happening. That’s often where those conversations would happen because I would allow that space. But like you said, my skillset is different, and that's where my focus is, is more how are you feeling, where are you mentally and emotionally with this process. Dr. Wilfong: And many times I've found that we start involving people even outside of what we think of the traditional health care team. A lot of patients have religious issues when they're dealing with a serious illness like cancer. And I can't tell you many times I've referred someone back to their local priest or chaplain or pastor to have some of those conversations that I'm not trained to do, but they are, and help them through some of that part as well. So, and even like lawyers and figuring out forms and documents to make sure that your assets and your wishes are done. It involves much more than just the health care team to do that. So Lydia, if a physician in a health care team is not really talking about this to a patient, they really want to talk about it, how do they approach us and get these conversations started? Any hints or tips? Lydia Mills: Yeah, like I said earlier, I think jotting your thoughts down so that it's clear when you, you know, you can remember when you get into the office and just saying, you know, hey, I have some questions for you or some things that have been on my mind that I would like to discuss. If there's someone from the health care team that can be invited in to help facilitate, sometimes that is helpful. I know as a social worker, I used to do that quite often, but patients and their families can absolutely do it themselves, and it's okay. Again, sometimes the provider is so focused on these are the next steps, but it's not that they don't want to hear this information. It just doesn't always come naturally to think, to say, oh, and what else might you have that's not related to your side effects that you want to share with me? So I encourage people just to make sure they have kind of clear in their mind what they want to talk about because physicians' time is limited. And then just say, hey, I have a few things I'd like to talk about with you as well. Dr. Wilfong: I agree, and great call out on how do you ask the other care team members. I mean, if you're sitting in an infusion room for a few hours, your infusion room nurse has a wealth of knowledge and support and potentially can raise things to the physician that you may not feel comfortable raising to them. I've had that happen many times as well where my nurse will come up to me and go, “Did you know Ms. So-and-so needs to talk about blah, blah, blah?” I'm like, “Oh no, but we will.” And so that care team approach can be really valuable. I think coming prepared with questions and comments as well, I mean, feel free to ask, what is this chemotherapy going to do to me? What are the side effects? What can I expect? Is there anything long term that's going to be a problem for me? Can I go back to work? Things like that. Any other thoughts about questions that people could potentially bring, Lydia? Lydia Mills: Yeah, and you know, I think it's a great opportunity, because I would have some patients who were afraid to bring up to their physician that, you know, maybe they don't know if they want to continue treatment, or even pursue that, you know, next idea of treatment. So asking questions, pointed questions such as, well, you've told me what it's like if I'm going to have treatment and what to expect. What if I were to not have treatment? What might that look like? Or what if I only do it for a short amount of time? And you know, physically, what might that look like for me? Or if I don't pursue treatment at all, what might that look like for me? And I think sometimes, again, people are afraid to raise those questions, but they're very valid questions because sometimes the focus is on treatment, and maybe that's not what that patient wants to do. Dr. Wilfong: I think you said it really well earlier when you talked about providing space. I think it's important for us as health care providers to provide the space for people to have these conversations, to initiate these conversations. But then I think it's also important for patients to feel comfortable having space with their caregivers, their loved ones, to have these conversations as well. So Lydia, any final thoughts or takeaways that we should leave folks with? Lydia Mills: No, I just think from a patient perspective, don't be afraid to bring up the topic. And from a provider perspective, I don't know how you feel about this, but I think even those patients that have maybe curative intent, it's still important, I think, to have a conversation about what they're hoping to get from this treatment and what they might have planned, depending how long that treatment may last. Because I will tell you, it's mortality that comes to everybody's mind after diagnosis, you know, even with a curative intent. And so I just think it's really important, again, to bring this up with all patients. What is important to them? What are their hopes to get from this or not get from this? Dr. Wilfong: Well, thanks, Lydia. I learned something from you every time we talk about this topic. So I appreciate the time. And definitely encourage everyone to have goals of care discussions with your physicians and health care teams. It's important. Lydia Mills: Absolutely. Thank you. ASCO: Thank you, Dr. Wilfong and Ms. Mills. Find more podcasts and blog posts in the Meaningful Conversations series at www.cancer.net/meaningfulconversations. Cancer.Net Podcasts feature trusted, timely, and compassionate information for people with cancer, survivors, and their families and loved ones. Subscribe wherever you listen to podcasts for expert information and tips on coping with cancer, recaps of the latest research advances, and thoughtful discussions on cancer care. And check out other ASCO Podcasts to hear the latest interviews and insights from thought leaders, innovators, experts, and pioneers in oncology. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds lifesaving research for every type of cancer, helping people with cancer everywhere. 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