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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 import