Advance Care Planning in Adolescents and Young Adults with Cancer

A variety of perspectives are explored as Dr. Westin speaks with Dr. Jennifer Mack, Dr. Chun Chao, and Mallory Casperson about end-of-life care planning in adolescent and young adult cancer. TRANSCRIPT The guest on this podcast episode has no disclosures to declare.  Dr. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours, the podcast where we get down and dirty with manuscripts that are being published in the Journal Clinical Oncology. And I am your host, Shannon Westin, GYN Oncologist and Social Media Editor of the Journal of Clinical Oncology. I am so very excited to have a number of guests with us today to discuss a very important paper entitled “Discussions About Goals of Care and Advanced Care Planning Among Adolescents and Young Adults with Cancer Approaching the End of Life.”  And I'm joined by several of the authors of this important paper. The first is Dr. Jennifer Mack. She is the Associate Chief in the Division of Population Sciences, an Associate Professor at Harvard Medical School and Senior Physician in Pediatric Hematology Oncology at the Dana-Farber Cancer Institute. Welcome, Dr. Mack. Dr. Jennifer Mack: Thank you. Dr. Shannon Westin: We also have Mallory Casperson. She is the cofounder and CEO of the Cactus Cancer Society. They provide online support programs and resources to young adult cancer survivors and caregivers in the comfort of their own homes. Welcome.   Mallory Casperson: Thanks for having me. Dr. Shannon Westin: And then, finally, last but not least, Dr. Chun Chao. She is a Senior Research Scientist in the Division of Epidemiologic Research in the Department of Research and Evaluation at Kaiser Permanente Southern California. Welcome.  Dr. Chun Chao: Thank you. It's a pleasure being here. Dr. Shannon Westin: So I want to get right into this. I think that there certainly has been a lot of discussion, at least at our institution as well as at the ASCO level, around advanced care planning across all patients with cancer and anyone with a diagnosis of cancer. And I would love to just start and level set and make sure all of our listeners are all on the same baseline around the incidence and prevalence of cancer in adolescents and young adults. Like, first, define what are the age groups that we're looking at here? How common is cancer in this population? Dr. Jennifer Mack: Right. For this study, we defined adolescents and young adults as individuals aged 12 to 39. And right now, about 90,000 adolescents and young adults are diagnosed with cancer in the United States each year. Those numbers are also rising, so more and more are diagnosed each year, and because of that, we think it's increasingly important to pay attention to the needs of this population. This population really experiences a whole range of different cancer types, some of which are more common in children, some of which are more common in adults, but the most common ones include breast and gastrointestinal cancers, sarcomas, germ cell tumors, leukemias, lymphomas, and brain tumors. Dr. Shannon Westin: And your manuscript notes that adolescents and young adults seem to receive medically intensive measures at the end of life. Now, how common is this across this group? And do you all have a sense of some of the reasons that we see this increased use of these measures? Dr. Jennifer Mack: That's a great question. We and others—actually, the early work that led to this study was done with Chun. We had previously found that most adolescents and young adults receive at least some kind of medically intensive care at the end of life. And that includes things like being hospitalized, being in the intensive care unit, receiving chemotherapy, and spending time in the emergency room near the end of life. And so, if you take all of those together, about two-thirds of adolescents and young adults receive at least one of these near the end of life.  And we don't know the reasons for this. There are probably complex reasons. Some adolescents and young adults may actually want to receive these kinds of measures, maybe because they're young and they want to do everything they can to live as long as they can. And some patients in this age group are parents to young children, and they may be making choices to prolong life and be there for their kids. But we also know that if we look at older adults, most people who know they're dying don't want to receive this type of care, which is also associated with more suffering and with poorer quality of life. So it's also possible they're making these choices because they don't fully recognize they're approaching the end of life or because they haven't had opportunity to plan for this time through conversations with their medical teams. Mallory Casperson: I think the conjecture, too, that a young adult is likely to focus on extending life, even in a situation where palliation is the stated goal, is a really great conjecture. This population is really burdened by these unique psychosocial issues that are driven by the extreme disruptions that cancer has on major life milestones. Like Jenny said, they may have young children at home, they may have a new spouse at home, still be trying to advance at work, you name it. So this period of young adulthood is really characterized by constant change. And it's possible that these young adults are being driven to stay present in their lives for really as long as possible to reach some of these goals or even just to support their young families as they reach their own goals. Dr. Shannon Westin: I really appreciate that context, and I'm going to always bring it back to what I know as a provider of gynecologic cancer care, where we see quite a bit of young people at the beginning of their life, at the beginning of their fertility. And I think it is so important to keep that context in mind as we're designing interventions and studies and things like that. So I really appreciate that, having the ability to kind of see from that standpoint. So I think you guys have convinced me this is important. We know the reasons. So why don't we just lay out the objectives of this particular study and give our listeners a brief review of how it was designed? Dr. Jennifer Mack: Great. We wanted to know how often adolescent and young adult patients with incurable cancer have discussions about prognosis and end-of-life care planning before they die. And a secondary goal was to understand whether having earlier discussions would change the type of care that's delivered. So, for example, having those discussions about goals of care earlier in their illness, could that make them less likely to receive intensive measures?  So, to do the study, we conducted a retrospective review of health records for nearly 2,000 adolescents and young adults who died between 2005 and 2019 after receiving care in one of three centers—the Dana-Farber Cancer Institute, Kaiser Permanente Southern California, Kaiser Permanente Northern California—and looked for documentation of discussions about care planning. For this study, we focused on patients who either had stage IV disease at diagnosis or who had experienced a recurrence because we wanted to ensure that we had a population of young people who were living with advanced disease and not people who might have died suddenly and unexpectedly during treatment, because they might not have had the same opportunity for end-of-life care planning. So we really wanted to focus on those who had the poorest prognoses. Dr. Shannon Westin: It's a really large group of people and, I think, hopefully fairly representative. I guess my question is, when you're looking at the group that you were able to kind of pull from in this retrospective database, which I think can sometimes be limited, do you feel like it was fairly representative of the population that's out kind of across the States, let's say? Dr. Chun Chao: So I think it's a real strength that we included two different care settings in this study, so a tertiary cancer center and community-based cancer care. Therefore, patients who seek care in each of these settings are representative in our study. I think this design really increased the generalizability of our findings. And on a further note, in this study, we actually observed very similar care patterns across all three study settings. So that was quite reassuring. Dr. Shannon Westin: So reassuring. And I think it brings up a point that I wanted to make, and I also agree was a strength of your study, is having that across the academic center and then a large integrated health plan. And I guess I'm just curious how your collaboration came to be to kind of come across different groups and, of course, the inclusion of Mallory from the patient advocate side. I think this is a testament to your powers of collaboration. I'd just be interested in how that kind of came to be. Dr. Chun Chao: So this goes back to almost 10 years ago. I think, at that time, people started to really recognize that adolescent and young adults with cancer were a very understudied group, but they are also very challenging to study. So, for example, AYA cancers, adolescent and young adult cancers, are fortunately not very common. Although the number is increasing, you do need a large population base to study them. So, at that time, researchers at Integrated Health Systems started to really see that we had an opportunity here to really contribute to this knowledge gap, leveraging the resources that we had at these health systems, especially the ones that have a very large membership and a long-term retention of these members and also a comprehensive electronic medical record system.  At that time, my colleague and I published a study that demonstrated the feasibility of using these resources to do follow-up studies of long-term health outcomes of AYAs with cancer. And I think that we might have attracted people's attention to utilizing the resources at these health systems to do such studies. So Jenny was the one who really saw the need or the lack of data or the need of high-quality data to really improve care for our AYAs who are at that end-of-life stage. So she reached out to a research network called the Cancer Research Network, who I think that the people there connected Jenny with me because I was also starting to work on long-term health outcomes of AYA cancer survivors, adolescent and young adults. After we talked, we were like, “We have to get this funded. We have to get these questions answered. These questions are so important.” So, as Jenny mentioned, we did a pilot study that really showed there is a lot of burden of medical intensive care at the end of life for our young patients. And, as often is true with research, this opens up a lot more additional questions that we needed answers for. So we have been working together since then.  Mallory Casperson: I came into this group sort of by accident. My background is in engineering. I was about halfway through a PhD when I needed to leave a couple years outside of my first cancer diagnosis. And I was at ASCO staffing a booth for my organization and just happened to meet a researcher from Kaiser Permanente Northern California, and the rest is history. That introduction sort of got me into this world, and, once you know one person, you get to meet others. And it's just been a really, really wonderful opportunity to help, I think, insert the patient voice. But also, for me, I just love research and data. And so getting to help advance the conversations happening around adolescent and young adult care in this research setting and in these settings where we are getting to look at very large datasets has just been really, really wonderful. Dr. Shannon Westin: These are my favorite parts of these podcasts, these stories of how things kind of came to be. And, at the risk of taking too much time there, I love the story, and I'm so in awe of you guys.  I guess, let's get to the bottom line. What did you guys find? Did you find what you expected in regards to advanced care planning and goals of care in this population? Dr. Jennifer Mack: So we felt that most patients had documented discussions about prognosis, about goals of care, about palliative care, hospice, and their preferred location of death before they died. Dr. Shannon Westin: So I was actually kind of impressed at that. It seemed like a lot. I was expecting—I don’t know what I was expecting, but I think I was expecting less documented discussions because, in my own practice, I don't necessarily think I do a great job of this. So was that in line? Were you expecting to see such kind of high levels of documentation? Dr. Jennifer Mack: I really agree with you. I was impressed with the fact that most patients had these discussions. Many of them had more than one discussion about their goals of care. So their providers were going back and having follow-up discussions, making sure that their goals of care were the same and weren't changing over time. So I agree. I was pleasantly surprised with how often these were happening.   I would say I'd love to see these discussions either happening with everyone or at least offered to all patients so that they can say whether they want to have them or not. So, in this study, 17% of patients never had a discussion about goals of care. And non-white and Hispanic patients had lower rates of discussions than white patients. So there are some potentially important gaps here that need attention. But I also think you're right; there's a lot of good news here. Clinicians are making consistent efforts to talk with patients about their wishes for care, and then they're documenting them, which is an important thing because it allows those wishes to be known by everybody on the care team and helps to ensure that they're going to be carried out. Dr. Shannon Westin: I was also intrigued by the finding of the younger patients having earlier discussions around advanced care planning and hospice and goals of care. Any thoughts as to why that might be? Again, I felt like it was a little bit opposite of what I was expecting, not having a ton of background in the area.  Dr. Jennifer Mack: I was surprised, too. We had to check the numbers a couple of times just to be sure because it wasn't what I was expecting. And we don't know for sure what the reason for this is, but I think one possibility is that some of these discussions with the youngest patients, or for the youngest patients, are happening with family members, maybe their parents. And it's possible that clinicians are a little more comfortable or more likely to talk with parents than with the young patients themselves. And so that could actually increase rates of discussions for that group.  One thing we didn't assess was who was there for the discussions. It's not always documented. There's more to learn there about who was there and more about what was discussed. But that was our guess is that these may be family discussions more so than patient discussions. Dr. Shannon Westin: That really makes a lot of sense. And then I guess the next natural question is when we have these earlier goals-of-care discussions or when we have these discussions at all, what did you guys see on the impact of those kind of medical interventions that happened after? Dr. Jennifer Mack: Yeah. We found that when goals-of-care discussions happened earlier, more than a month before death, that adolescents and young adults were less likely to receive some of these intensive measures that we've talked about, so less likely to receive late-life chemotherapy, care in the intensive care unit and emergency room, and less likely to be hospitalized in the last month of life. So, even though these findings were observational, it creates the potential that having discussions earlier can help reduce some of these intensive measures and refocus care on palliation, if that's what patients are looking for. Dr. Shannon Westin: I think that's a really important point because we often bring our own thoughts and beliefs into the care of our patients and think, “Well, I wouldn't want those things.” And I think making sure we know where the patient is—and Mallory, I'd just be interested to get your thoughts here. How do we best approach those things and try to avoid—you know, we want to give advice where advice is needed, and we want to make it clear what the goals or what the potential successes might be. But I'd be really interested to hear your thoughts around framing those discussions and making sure that people understand what can be gained from those types of intensive treatments. Mallory Casperson: Yeah. I think it's important with patients in this situation—and it was discussed in the paper, but the idea of timing, how frequently are we having these care preference types of conversations, and how often are we reframing things with the patient based on how goals might be changing? I think that's a huge piece of the equation because, especially when we're talking about 30 days before death, 60 days before death, things might change quite rapidly from week to week and so having some of those things in mind.  And then it wasn't discussed as much on this paper, but it definitely has been in other work by both of these authors, as well as other just end-of-life research, but this idea of who is in the room for these conversations, I think, is another really important piece of this. Because a caregiver might have different preferences and goals than a patient. If a patient is 15 versus a patient is 25 versus a patient is 39 is also going to change things, and it's going to change the perspective that their caregivers bring to the equation. And so I think who is in the room and how are we doing that very difficult thing of weighing people's opinions in the situation, I think, is very complicated and also very important to figure out. Dr. Shannon Westin: And I think that that leads to my next question: How do we get more of that information? What do you think are the next steps for this particular work? And also, I would just say, how do we guide that? I mean, I struggle with these conversations. It doesn't matter if my patient is 22 or 82. I think trying to meet people where they are is one of the critical pieces. So what's next for this work? How do we help inform these discussions for the caregivers and for their providers? Dr. Jennifer Mack: I think you're right that we do think an important next step is promoting earlier discussions about goals of care and advanced care planning, partly because it gives patients time to reflect on what's important to them, to digest the news, and then make thoughtful decisions that are best for them. But from a research perspective, I think, as we do that, we need to understand more deeply what adolescents and young adults want from these conversations. What topics should be addressed, with whom, and how should they be discussed? And we've also learned from other work, including work that the three of us have done together, that goals of care for adolescents and young adults aren't always as simple as wanting care focused on palliation or prolonging life, this kind of binary thing. Often, there are these other equally important goals, like making sure their loved ones are okay, what's going to help them the most, having opportunities to nurture and deepen their relationships, and finding ways to attain their life goals and meaning while they're living with advanced disease.  So all of these different aspects, which aren't always a typical part of goals-of-care conversations, could be integrated to help support the kind of wider goals that are held by adolescents and young adults with cancer.   Mallory Casperson: I think, too, adding to that, we've talked about how AYA patients' goals of care have changed over time. So I think timing is a thing that could be added into future work, which is a difficult thing, I think, to gather from some of these records sometimes. But also, I think thinking through what these different words mean to different populations and how we're defining them is really important, too. So just an example outside of end-of-life care: When you tell a 30-year-old who's going through cancer that exercise is important during treatment and you talk to a 70-year-old going through cancer that exercise is different, that means different things, and they themselves have different context around what that word means in their normal life. And so I think when we throw out words like “palliation,” “palliative care,” and just general end-of-life conversations, that the same context applies. When an AYA agrees that maybe palliative care is the goal, what does that mean to them, and what are they bringing to the conversation in terms of their younger perspective than an older population that we're potentially more used to working with? So I think framing these ideas and how they might differ between populations is another thing that would serve as future work in this AYA end-of-life care space. Dr. Shannon Westin: Great. Well, thank you all so much. The time just flew by. This was such a great discussion of an incredible topic, and I just want to thank you all again for your hard work in this space.   And thank you to all of our listeners. Again, we were discussing the manuscript “Discussions About Goals of Care and Advanced Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life.” And this is published in the JCO, so go check it out. And please do go check out our other podcast offerings and tell us what you think on Twitter. 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