Talking with Your Children About Your Metastatic Cancer Diagnosis and Prognosis, with Eliza Park, MD, and Paula Rauch, MD

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses. Brielle Gregory Collins: Hi, everyone. I'm Brielle Gregory Collins, a member of the Cancer.Net content team, and I'll be your host for today's Cancer.Net podcast. Cancer.Net is the patient information website of ASCO, the American Society of Clinical Oncology. Today, we're going to be discussing how parents can talk with their children about a metastatic cancer diagnosis and their prognosis. The information discussed in this podcast is based on a study published in JCO Oncology Practice titled, “Talking with Children About Prognosis: The Decisions and Experiences of Mothers with Metastatic Cancer.” Our guests today are Dr. Eliza Park and Dr. Paula Rauch. Dr. Park served as the lead author on the study, and Dr. Rauch served as a co-author on the study. Dr. Park is the deputy director for the UNC Lineberger Comprehensive Cancer Support Program at the University of North Carolina at Chapel Hill in Chapel Hill, North Carolina. Thanks for joining us today, Dr. Park. Dr. Eliza Park: Thank you for having me. Brielle Gregory Collins: Dr. Rauch is the director of the Marjorie E. Korff Parenting At a Challenging Time, or PACT, program at Massachusetts General Hospital in Boston, Massachusetts. She is also a member of the Cancer.Net Psychosocial Oncology Advisory Panel. Thanks for joining us today, Dr. Rauch. Dr. Paula Rauch: My pleasure. Brielle Gregory Collins: Before we begin, we should mention that Dr. Rauch and Dr. Park do not have any relationships to disclose related to this podcast, but you can find their full disclosure statements on Cancer.Net. Now, to begin, Dr. Rauch, what are some of the challenges or fears parents with metastatic cancer have in talking with their children about their illness? Dr. Rauch: I think as parents themselves are adjusting to their own diagnosis, whether it's the parent who is living with the cancer or their co-parent, they are hoping to not burden their children, to not worry them too much, and at the same time, they want to be sure to include their children in this very important event that's happening in the life of the family, and that is a tough balance for any parent. Brielle Gregory Collins: And I recognize that these conversations might be different for parents who don't have metastatic cancer. So what ways are these discussions different when parents have non-metastatic cancer? Dr. Rauch: I think for me, the easiest way to talk about this is to think about how we encourage parents to talk with their children about cancer, and that varies depending on the age of the child. But 1 way that we often talk with parents that they may explain cancer to younger children is to talk about the fact that our bodies are made up of millions and millions and millions of teeny-weeny, little cells that are kind of like Legos, and that what cancer cells are, they're kind of like Legos that are mixed up and don't fit together right and can't do their jobs right. When someone has an early-stage cancer, the goal of treatment by their medical team is to be able to get rid of the cancer completely. The goal of treatment when someone has metastatic disease, when those mixed-up cells are in more than 1 place in someone's body and the treatment can't make them go away completely, the goal is to keep those mixed-up cancer cells as small as possible and in as few places as possible so they don't interfere with a person's healthy cells. Brielle Gregory Collins: Okay, thank you for explaining that. And what do parents with metastatic cancer need to know before talking with their children about their illness? Dr. Rauch: I think parents generally know their children well. And so part of what they are thinking about is, first off, what is communication like typically in their household, what's the developmental stage of their child, what's their child's understanding of things, and also importantly, what their child's temperament is. You could think about temperament in children as being a little bit like personality in adults, but temperament is a way of capturing that kids have a typical way of adjusting to or understanding changes in their lives and in events that happen at home. And so taking all those things into consideration, parents may want to share information at a particular time, maybe at the beginning of a weekend when they have time to process with their child. They may have a good sense of what their child's understanding is. An older child may know a lot about cancer, a younger child, almost nothing. So we really think about parents as the expert on their own children. We have a lot of experience with the kinds of words that you can use in talking to children, but it's always a partnership of parents knowing their children and what their usual way of communicating is and then adapting this particular set of information to that knowledge base. Brielle Gregory Collins: Okay. And I want to talk a little bit about prognosis and what parents should know about talking with their children about their prognosis. So first of all, just getting into that topic, why is it important for parents with cancer to know what their prognosis is? Dr. Rauch: Well, you can't really explain anything to your child that you don't understand well yourself. Many parents will tell us that they find themselves asking really important questions of their oncology team because their children ask them really good questions or because even if they're not quite ready to describe fully something to their child, it's kind of like they want a script in their back pocket that they can draw upon if questions come up. When we have a sense of how we want to answer something, then it's easier to present a calm presence to children and really then to help them to feel their questions really are welcome. Brielle Gregory Collins: Thank you, Dr. Rauch. And Dr. Park, branching into the study, you've described several different approaches that parents can use when talking about their prognosis with their children. So can you summarize for us what those strategies are? Dr. Park: So that's a good question, and I would say, in taking a step back, kind of the overarching kind of goal of the study is that we know that these conversations can be nuanced and that they can be challenging. So given that we know that there's multiple decisions and challenges related to this, kind of how are the ways that parents who are remarkably resilient, thoughtful, find ways to kind of thread this needle in a way that makes sense for them and their families? And I think 1 of the main takeaways is to think about it is almost as, "What does honesty mean kind of when talking about cancer?" Because what can be an honest conversation in 1 family can look dramatically different from another's, and that's not to say that either way is better or worse, just different. So for some families, that meant discussing details about what their scans looked like and what that meant for their treatment and for the stage of their cancer, and for other people, it meant bringing up the possibility that their illness was chronic or may not be curable. And what we found is that for most parents, it was less about whether they should say something at all but rather a timing of when, and that takes a variety of decisions related to the factors that Dr. Rauch mentioned earlier. Brielle Gregory Collins: I know in the study, there were several strategies that were outlined, so I want to go back to that for a minute. Do you mind just walking through what each of those strategies individually was and what they mean for parents who might be talking about this with their children? Dr. Park: Absolutely. So as I mentioned before, there was many different strategies. So what I'm going to describe may not reflect everyone's experience, but the main 1 that we identified is parents simply wanted to be honest, and what that meant in terms of discussing their prognosis then took a variety of different forms. And so the strategies that came up most frequently that parents described using was, 1, kind of introducing the language of illness that might not get better in a way that can be fairly gentle. And so the language that many parents used was kind of, "Treatment for the rest of my life," and this was a way of signaling some of the changes that are going to be happening in their family moving forward but not necessarily including other statements that the children may not necessarily-- or the parents may not necessarily be ready to discuss right then and there. The other common strategy that parents, I think, very instinctively used was having these many conversations over time. I think that the truth is this is not a 1 and done, to use a basketball analogy, conversation. This is something that happens kind of over the dinner table, at bedtime, in car rides, over the course of weeks, months, or most commonly, years, and there are a lot of children who grow up with a parent with cancer, and over time, the details can kind of emerge. The third major way that parents would often approach these conversations was via questions, and the truth is that these conversations about prognosis were not always initiated by the parent. We had children as young as 4 who were asking questions about kind of what this means and what might happen next. And so parents often kind of look to their children's questions as kind of cues for cues of what they believe their child may be ready for in terms of specifics. And I would say that the kind of last strategy is something that is just instinctual that I think every parent does without even thinking about it, which is just really reinforcing their love and their desire to help reassure their children that this may be information or news that is not desired but that they want the best for their children and to help their children feel secure, and I think that was probably the message that emerged in almost every description of parents' conversations with their children. Brielle Gregory Collins: Thank you. And in the study, the most common barrier to having these discussions was that the parent didn't know what to expect in the future. So can you tell us a little bit more about that? Dr. Park: Yes. So this was something that I think can be overlooked when we think about just, "What are the challenges in having these conversations?" I think we all understand that it can be emotionally taxing for parent or child, depending on what is happening with the illness, but this uncertainty about what happens in the future, I think, is a reflection of just how much progress has occurred in cancer therapies over the past decade. Many of our participants in the study had breast cancer, and these days, women can live with metastatic breast cancer for a decade or longer, and other individuals may not have quite the same expectation. And so because it can be so hard for patients as well as their providers to kind of be able to predict what happens next, it can be really challenging to figure out, "What does my child need to know next or even right now?" Brielle Gregory Collins: Thank you for outlining all that. That's very helpful. And Dr. Rauch, is there anything that all parents should do when having these conversations about their prognosis with their children? Dr. Rauch: I think most parents may not even think about this quite as prognosis but really more about what is going on with them. Just like any other family event, there is an illness that is underway within the parent, but there are also all kinds of changes in their home and things that will directly affect the child. So first, I think it's important to name the cancer because if you name it, then it can be talked about. If it's left as a euphemism, a bump, a lump, a boo-boo, that can be confusing. So I think the very beginning, even for children as young as 3, is to name it so it becomes something that is - I use a made-up word myself - talkaboutable so that there's the possibility and really the welcoming of questions in conversation. So I would say that's the first part. And then, I think, a combination of what the goals are of treatment for the parent and also, what the impact is day to day, week to week, month to month for the child. And the amount of time that a child is thinking, and maybe it is really moment to moment for a preschooler, it may be a much longer amount of time for an older child. So thinking in terms of those bits of time that makes sense at different ages and then, I think, recognizing that children who are even 7 years old and older are not just getting their information from their parents, but they're getting information from lots of other places. Kids of all ages may overhear information at home, and that's the most confusing way to get clear information about cancer and about how the cancer is unfolding for the parent. So continuing to check in with kids, "What have you heard? What are you wondering about?" And certainly, for older kids, addressing the challenges of children getting information from the internet as opposed to directly from a parent. Brielle Gregory Collins: Got it. So you definitely don't want it to be this elephant in the room. You want it to be an open discussion, and you want to be available to address the questions that your child might have and, of course, mitigate any fears that they might come across when they go on Google or talk with other people, things like that. Dr. Rauch: Yeah, you want to give the message, "Don't worry alone." And I'll sometimes say to parents of adolescents, "Let your teenager know that you're going to either worry about them or worry with them." And if the teenager shares their concerns of what they're hearing, then the parent and the teenager can problem-solve together. If the child or teen doesn't share their information, then the parent's going to worry about them, and when a parent worries about instead of with their teenager, the parent is much more likely to be off the mark and frankly, more annoying to teenagers, and many teenagers will respond with a smile to that, "Oh, yeah. If you're guessing what's on my mind, you're going to annoy me more. If we can talk about it together, we can actually address the things that are front and center." And I think helping teenagers to recognize that what they read about on the web is about a large group of people and it's about the past. So it's neither about how things are going to be for the individual, their parent, nor is it representative of the future of cancer care. So the best guess about a parent's illness trajectory is going to come from talking with the parent and the parent talking with their medical team, and that's an important message to deliver to kids really in older elementary school age, middle school, and adolescents. Brielle Gregory Collins: Definitely. That's helpful to know. And for parents who might be struggling with a child who doesn't want to talk about the illness, what advice do you have for people in that position if their children don't want to talk about it? Dr. Rauch: So I think parents need to give updates to their child and say, "I want to be sure that you have the opportunity to hear, and I want you to hear from me. You might overhear me talking to your aunt about this or your grandparent or about that. So here's what's going on.” Because, again, overhearing information is the worst way to have it communicated. It's not respectful to the child either to feel like, "Oh, my parent is talking to other people about the specifics of their illness and leaving me out." So communicating to a child, "I don't want you to worry alone. Here's what you might hear me talking about with others. Here's how my treatment or my illness may affect us at home and you, the child, in particular. I am eager to hear your questions, but it's up to you to let me know what's on your mind." And then I think for some kids, it's also giving them permission to talk to other caring adults, who are also a good source of information. Some kids can't bear to have the conversation with their parent because it's upsetting. They can see that their parent is upset or they feel upset themselves. But they might talk to their best friend's mom, or they might talk to another family member, or they might talk to a co-parent. And guiding children and teenagers to good resources, and by resources, I mean people who they can discuss the parent's cancer with, is also important. Dr. Park: I would also add to that, as a clinician, I often ask patients, "What is helpful for you to know?" And what I might assume is helpful for them to know may be completely different than what is the truth, and we often find that that can be another way to help kind of open up some conversations to find out what are the kind of lingering questions or kind of unknowns in their child's mind.   Dr. Rauch: I also find that some teenagers who are not so eager to talk, if you ask them, "What's the dumbest thing anybody has said to you?", that sometimes is a gateway to a conversation. Brielle Gregory Collins: That's a great question. And Dr. Park, going back to the study, many parents in the study were worried about upsetting their children by talking about their prognosis. So what can parents do to help if they're in this situation? Dr. Park: Well, I think the truth is that parents are worried about upsetting their children because these conversations are hard for a good reason, and there is a need for balance and for weighing these different considerations. I think we find that parents can do things like kind of put their toe in the water. I don't think all this information needs to come out on the very first time they're telling their child about their diagnosis. If anything, we find that most parents take a more gradual approach. One of the things I often think about is that it takes time for adults to adjust to a cancer diagnosis and what that means. And similarly, it takes time for kids, too, and so there isn't necessarily a rush to kind of put it all out there on the very first conversation. And the other things that I think that are helpful can be the more clear an individual is about kind of what they can expect with their illness and the different possibilities, I think, can at least reduce some of the uncertainty on the parent's end. It may not necessarily make the conversation less worrisome for the parent or the child in terms of that immediate moment, but I think oftentimes, parents can often then give additional information that they may not have known if they hadn't had more information from their provider about what the next treatment might be, if this 1 doesn't work the way we would like it to, or that things may not necessarily happen, things may not suddenly change on the drop of a dime tomorrow. I think that sometimes there can be uncertainty on the parent's end, and that is something that is very modifiable with having some conversations with their health care team. Dr. Rauch: I think often parents can reassure their child that they're not expecting anything to happen this week or next week or this month or next month or today or tomorrow and that if things change, that they will update their child. And then the other thing I would just say is that parents are often very, very worried that when they share information with their child, their child will be so upset and sort of almost like that their childhood will stop at that moment. And in my experience, the vast majority of parents are surprised that their child accommodates as quickly as he or she does. It doesn't mean that it's not upsetting. It is upsetting, and actually, we would be worried if a child or a teenager wasn't upset by a parent's life-shortening cancer diagnosis. It is upsetting. So using as the yardstick whether children are transiently or for a time upset is kind of the wrong yardstick. We would expect just lots of things upset kids, then they accommodate, and the parent is there to help them through that process. If parents wait too long to begin the conversation with their child, then they really have deprived their child or teenager of the opportunity to co-process this difficult news. Think about it like an elevator if you're starting at the penthouse, and you're going down a floor at a time. It's a lot easier to adjust to a gradual stepwise change than it is to go from the penthouse to the basement in free fall. So slowly having multiple conversations, as Dr. Park was discussing, but also not being afraid to let children be upset. Most parents have experienced their child's distress about a host of things. I've been watching my toddler grandchild start in daycare. He weeps when he starts in the morning, and then he's fine at the end of the day. I don't mean to minimize how different this challenge is, but part of what we do as parents and grandparents is to provide children with the opportunity to be safely upset with us. Brielle Gregory Collins: Right. And I want to go back to this idea of the questions that children ask. I know we talked about the importance of addressing those questions. And Dr. Park, in the study, parents often relied on their children's questions to help guide these conversations, but are there any questions that parents should be asking their children when it comes to their illness? Dr. Park: I think the truth is that we would like for parents to be listening even more than telling, and by that I mean that the main concern of parents, as Dr. Rauch mentioned earlier, is whether this is going to be too upsetting for their children, and that is not something that you can necessarily know or predict about how your child is kind of coping with this news by a single conversation or by you talking to them. Rather, I think it means kind of finding out kind of, "How does this impact their child's lives? What are the questions that they have been wondering about?" And really just, I think, being curious about how their child is thinking about this and what they understand, I would say, would be the kind of questions we would encourage all parents to think about. The other thing I also like to say is that children are remarkably curious people. I have young kids, and I think our dinner table conversations are essentially 1 long 20 questions pretty much every night, but not every child is necessarily going to feel comfortable asking some of these questions. And so having the parents at least find out what their children want to know, I think, can help put some of that expectation or pressure to ask these kind of bigger questions off their kids and perhaps kind of in the parent's hands. Dr. Rauch: I have a couple of questions that I might suggest for parents of different ages. So I think parents of young children, whether it's the parent or a co-parent or someone else that asks to find out how young children understand why someone got cancer, it happens that sometimes in this early age where kids really feel like they caused the things that happen around them, they may have a misconception that they caused the parent's cancer or that when the parent is fatigued, that the fatigue is because the parent doesn't like them or is bored with them or irritable at them. So I think remembering that very young children are particularly self-centered, and that's developmentally normal to ask questions there. I think sometimes for older kids, just asking what someone who hasn't lived with a parent with cancer-- what other kids don't get about what it's like to be them can sometimes again be a way into having a child share what they feel isn't well understood by their peers or isn't well understood by the people around them. Brielle Gregory Collins: Thank you for breaking those down. And thank you both so much for your time and for sharing your expertise today. It was so great having you. Dr. Rauch: Thank you. Dr. Park: Thank you. Brielle Gregory Collins: For more information on this topic, please visit www.cancer.net/talkingwithchildren. ASCO: If this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. This Cancer.Net podcast is part of the ASCO Podcast Network. This collection of 9 programs offers insight into the world of cancer care, covering a range of educational, inspirational, and scientific content. You can find all 9 shows, including this one, at podcast.asco.org. Cancer.Net is supported by Conquer Cancer, the ASCO Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/donate.