MD Anderson Cancer Center
[ Music ]
Lisa Garvin: Welcome to "Cancer Newsline", a podcast series from the University of Texas - MD Anderson Cancer Center. "Cancer Newsline" helps you stay current with the news on cancer research, diagnosis, treatment, and prevention, providing the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin, and today our guest is Morgan Henry. She's a social worker here at MD Anderson who has worked in pediatrics and also the intensive care unit. Our subject today is talking to children about death. Morgan, obviously, that's something that comes up quite a bit, and I guess in this instance we're talking about them losing a loved one, a parent. How do you broach the subject with these children when you first find out?
Morgan Henry: So it's very important to give kids very honest and accurate as well as timely information. So if a patient's diagnosis gets to the point where they have a pretty poor prognosis, and they are considered terminal, ideally, you will have already spoken to that child about the cancer. So you're not breaking the news as well as the poor prognosis. However, in some instances, based on the diagnosis, that may be the nature of the disease, and that you receive a diagnosis, and it's, you know, terminal from the start. So regardless, you certainly want to provide information about the diagnosis first rather than just delving into the poor prognosis and the terminal state. So like I mentioned, it's very important to give kids timely information. So, ideally, as soon as you receive the information and have had an, you know, adequate time to process it yourself, you certainly want to have a conversation with your children to talk to them about the diagnosis, and if it's appropriate, then the prognosis as well. So it's important to keep that conversation using age-appropriate language, which, of course, again, will depend on the age of the child and the kind of the developmental stage. Typically, younger children, it's better to use more concrete and simple language. Kind of giving very basic information, and if they have questions, they will tend to ask there whereas the older you get. So we're talking seven, eight, nine, that age group tends to be more interested in factual information. So, again, it's very important to kind of give them a little bit more medical information, but, again, not as much as you would give a teenager or certainly not an adult, and then kind of once you get into the teenage years, they're probably going to be a little bit more curious. Ask more questions. Kind of think, have more foresight, forward thinking, you know, are you going to be here for my high school graduation, are you going to see me off to college, are you going to walk me down the aisle, you know, if I get married, that sort of thing.
Lisa Garvin: Now how is the process started? Obviously, the prognosis will be relayed from the doctor to the patient. Where do you as a social worker step in in this process?
Morgan Henry: Sure. So, certainly, when working with patients, you know, that is kind of a pretty standard question that we as social workers will ask the patient. You know, do you have children? If so, what have you told them thus far? How are they managing, you know, up until this point to kind of assess what information has been shared up until this point and then how can we catch the children up to speed. So, certainly, our role, you know, is to help educate the parents on, like I'm talking about, age-appropriate information and kind of the very basic tenants of speaking with children about cancer and, certainly, about death. So kind of educating them, giving them tools, strategies, kind of tips on how to have that conversation as well as assessing kind of where their child is at, where the patient and their, you know, partner are at. And then kind of just, again, educating, giving them tools, and helping, you know, support them through that. So -
Lisa Garvin: Do a lot of parents, though, try to go it alone and maybe not seek your help, and then, of course, the, you know, the outfall from that is that they may say things like mommy's going up to the sky, or they -
Morgan Henry: Right -
Lisa Garvin: May not, you know, they may be in total denial -
Morgan Henry: Right, right.
Lisa Garvin: So, do parents try to come to you for advice, or do they try to go on their own?
Morgan Henry: I think there's probably a little bit of both. You know, certainly, we as social workers can receive referrals in various ways, whether it's through the medical team. Even we've had, you know, family, we can have family members or friends call us with concerns as well as just our own, again, kind of case finding and knowing the patient, working with them over, you know, the course of their treatment here, but I would certainly image there probably are families out there who, you know, try to go it alone. Feel that they don't need the help, and, you know, I'm a firm believer that at the, ultimately, parents are the experts in their own children. They are the ones, you know, who know their kids best. However, that being said, this is often a conversation that parents have never had to have with their kids, whether it's because they have never experienced a death of a loved one, or they haven't had, you know, anyone die from cancer specifically. So it can be, understandably, a very difficult conversation that you as the parent are also dealing with and coping with. And so I think it's kind of a situation where the more support you can have, the better. That's not to say that you don't know your child best. You don't, you know, have the love and support for them that you're going to need, but it's just, again, I think it's a conversation that can be very unfamiliar for parents. And so just having a little bit of guidance, even if it's just reaffirming what they're already doing can be helpful and ease their own anxiety about the situation as well.
Lisa Garvin: And if the subject of death is broached with a child, there may be a gap between the time that they're told and the time that their parent or love one passes -
Morgan Henry: Right.
Lisa Garvin: So are there coping mechanisms, or how do children react when -
Morgan Henry: Sure -
Lisa Garvin: There's, like, this axe hanging over, and they're just waiting -
Morgan Henry: Sure -
Lisa Garvin: They must get anxious.
Morgan Henry: I think that brings up a really great point because certainly research shows that the more information kids have, the more it reduces their stress. So I think of a natural reaction for a parent, of course, is to protect their child. And so a lot of times parents won't communicate with their child, or they'll kind of hide certain aspects of their disease from their child in an effort to protect them. It's well intentioned, but that can really backfire because kids are a lot more perceptive than we adults may give them credit for. You know, they're sensing the vibe in the home. They're sensing, you know, there's some extra stress or sadness that mom and dad are experiencing, or parents are experiencing. And so it's very important, again, to keep them in the loop so they're not sitting there wondering, you know, kind of what's going on. Because, again, that can just cause more stress than the reality of the situation. Kids also tend to engage in magical thinking, which is when a child can make false associations. So mom got cancer because I didn't make my bed, or, you know, she's gotten worse because my brother and I got in a fight, you know, and have been fighting the last couple of weeks. They make these associations and take on, you know, the -
Lisa Garvin: They take on the guilt -
Morgan Henry: Yeah. They bear that burden and can really make these just false associations. So that's another reason why it's very important to kind of keep them informed throughout.
Lisa Garvin: I would assume that some children might even, and I don't know if this falls into age groups, that they might be very curious about death, and -
Morgan Henry: Sure -
Lisa Garvin: The beyond -
Morgan Henry: Sure.
Lisa Garvin: How do you handle that? I guess you're just factual with them -
Morgan Henry: Sure. And, you know, again, it will depend on the developmental stage, about kind of what facts you're giving and how much information that you're giving, but, again, kind of that really curious age tends to be kind of in that later elementary school age group. So the younger kids, they're a little bit more egocentric, a little bit more self-centered. So what they're kind of thinking about is if mom's gone, who's going to take me to school, who's going to make my dinner, who's, you know, going to do, you know, do all of those things that a parent does if that parent is no longer there. And so what it's, you know, you can really reassure them of, you know, who's going to help. Who's going to be there for them? Where's the, again, kind of six, seven, eight, nine year olds, they're going to be wondering, you know, what happens when you die? Where do you go? What does, you know, what do you look like when you die? Can you talk when you die, you know, when you're dead? So they might be a little bit more curious, which sometimes can be hard for parents to answer those questions because it's really putting it, I mean, it's a very kind of concrete, you know, it's just a very concrete way of thinking and very factual. So it really kind of, you know, puts the reality of their situation just, you know, right there in their, and then, you know, they need to, again, be prepared to kind of answer those questions.
Lisa Garvin: Now what is your feeling on allowing the child to be there with the loved one at the time of death, at the bedside? Is that recommended?
Morgan Henry: So it's certainly an individual case by case, you know, situation, and that's, I think, first and foremost, it would be very beneficial to contact a social worker about that kind of question, and I know in the ICU we do have a policy in place that where any child visiting has to meet with a social worker beforehand in order to kind of assess and prepare them for that visit. So I'm, you know, I don't think I can make a blanket statement about that, but the things that you would want to kind of consider. Again, what information do they know up until this point? Is this a brand-new diagnosis? You know, that, and I say brand new, but newer diagnosis where they've had little time to kind of process and adjust, or has, is this something that, you know, a parent has been dealing with for five years. So kind of look at those things, and, again, developmental stage. Kind of where they're at, and then I would also kind of look at does the child want to visit because they may not want to, and, certainly, if a child does not want to visit a parent in the hospital, and most certainly if it's a terminal situation, they have that right to make that choice. And from my experience, I think it's very easy for parents to assume they want to visit and to really want them to visit so that they can have that opportunity, but the reality is if a child does not want that and is not properly prepared for that, it can be very traumatizing at that moment as well as later in life. So it's really important to kind of have that conversation with them, do you want to visit, and if so, then you want to also be able to prepare them for what they're going to see, and, certainly, if, you know, I would also, you know, want to make sure that the patient wants their child to visit. Because sometimes, you know, if they're not in a state where they feel it would be beneficial, it's also something to maybe consider and kind of advise against, but I think there are a lot of factors that would play into it.
Lisa Garvin: Now what can a parent do if there is some time between the child is told and then when the parent actually passes? Are there things they can do to ask the child to cope with their feelings like -
Morgan Henry: Sure -
Lisa Garvin: Drawing pictures or keeping a journal -
Moran Henry: Sure -
Lisa Garvin: If they can write. What sorts of coping strategies –
Morgan Henry: Sure -
Lisa Garvin: Can we use -
Morgan Henry: And I kind of want to go back because I feel like I didn't fully answer your question kind of in regards to this specific question as well. If a parent knows their diagnosis is terminal, let the disease and the course of the disease guide their conversations with the children. Because there are some patients who know that they're always going to have cancer. It might be a long, drawn-out process, and if so, the children don't necessarily need to that their, you know, mom's going to die in approximately two years. Because, like you said, it's the axe over their head. They're just waiting for it to drop and that can cause even more anxiety than just the situation itself. So it's very important to kind of, again, let the nature of the disease guide those conversations. So if a parent is still receiving active treatment, and they're still, you know, going full throttle even though they know ultimately they're not going to survive this disease, if they're, you know, if they're still able to function fairly well, just, again, update them about the diagnosis, the treatment, not necessarily that overall prognosis. However, if a patient transfers, you know, transitions to, say, targeted therapy or, you know, where clinical trials are offered. So kind of, you know, more aggressive, last resort types of treatment, or if a patient transitions to supportive care only, those are, that's the time to kind of start initiating these conversations about the terminal state. And, most certainly, if hospice is being discussed, then that needs, you know, the children need to be informed of that as well. Because, again, we as adults can conceptualize time frames a lot better than kids can. So even though we might know, OK, this patient has, as per the doctor, approximately two to three years, kids are going to think, oh, all they're going to here is mom's going to die, and they might wake up the next day and think she's dead, and that's, can, again, cause even more anxiety. So I would discourage giving timelines even though the doctors may be giving you them as well just because kids are going to grab onto that, and just take that as, you know, the final word, and if that's not how it plays out, then that can be very detrimental as well. But in regards to specific coping strategies, again, depending on the age group, certainly with younger kids, they express themselves much better through kind of artistic ways. And so drawing pictures, painting as well as, you know, I mean, that's kind of the idea of play therapy. That play is the way that children speak and talk and express themselves. So any form of play can be helpful. Certainly, identify and as the older that kids get, again, they might benefit from journaling, reaching out to their friends -
Lisa Garvin: Via social media.
Morgan Henry: That could be certainly, and I know the Department of Social Work, we actually have a support group for kids whose parents have cancer, and so that would be a good form of support. And, certainly, informing the children's school, you know. Obviously, you're not obligated to provide the full medical history, but giving them the kind of a basic idea of what's happening can be very helpful. So that way the teachers can be aware if there are any behavioral changes, or if the child, you know, seems to be struggling. So kind of reaching out to the school community as much as you're comfortable in terms of, again, information sharing. Identifying other adults in the child's life because, again, it's certainly understandable that the parent who has cancer is going to be dealing with a lot themselves as well as their partner, but certainly identify other adults, whether it's a grandparent, an aunt, an uncle, a neighbor, a friend that the child can kind of go to if needed. But, you know, I think at the root of what all, the best, you know, coping strategy is really to communicate and give kids a safe place to express themselves, express their worries, express their fears, and in turn, you as an adult need to be modeling healthy coping strategies. So whether that's, you know, taking a walk if you are able to or even just watching a movie, spending time together as a family. You know, having these conversations, having, you know. I've had a lot of families that kind of how they choose to disseminate information is they have, like, a weekly family meeting, and so the child knows on Sunday at, you know, dinner time, we're going to have a conversation and get an update about mom, and that's my time to ask questions, and if there's anything new going on, we'll find out about it then. And then after that meeting they can go outside and play. They can go on with their lives and just know that that's kind of their sacred time to have these conversations. So, yeah, I think family time, reaching out to friends, setting up a support system, whether it's through the school, family, friends, neighbors, and then, again, with younger kids. Giving them alternate ways to express themselves, whether it be through art or play, and then, again, as kind of older, as the kids get older, when, you know, reaching out to their friends and, whether that's by social media or just spending time together can all be very helpful.
Lisa Garvin: When and if do you bring in a grief counselor for children?
Morgan Henry: I think the first step would be to speak with your social worker here at MD Anderson because, again, they will be able to kind of assess the family situation, assess, because, you know, everyone is different. There are some kids who may benefit, you know, two years out from seeing someone, and there may, and that may not be the case for everyone. So I think the first step would be to speak with a social worker, let them know about your concerns, and he or she will be able to kind of, again, assess your family situation and then direct you to appropriate resources in the community. Because, you know, there certainly are resources not only through social work, but as well as community resources that are oncology specific, and then I know there is a resource that a lot of our patients are referred to, or patient's families are referred to, you know, kind of in preparation for a death of a loved one, and that's an organization called Bo's Place, and it is a grief support center that offers free support groups for children and families who have lost a loved one regardless of the reason or the cause of death or the age, but if they have lost a parent or sibling, they're able to participate, and I know that's something that's been very useful to a lot of families, but I think in regards to a specific grief counselor, one on one, that would really depend on the situation, and, you know, I think the more support you can offer, the better. And I think it would just really depend on the individual situation.
Lisa Garvin: And this is all very good advice for people on broaching the subject of death with children. Thank you, Morgan, very much for being with us today.
Morgan Henry: You're welcome.
Lisa Garvin: If you have questions about anything you've heard today on "Cancer Newsline", contact ask MD Anderson at 1-877-MDA-6789 or online at MD Anderson dot org slash ask. Thank you for listening to this episode of "Cancer Newsline". Tune in for the next podcast in our series.
© 2013 The University of Texas MD Anderson Cancer Center
1515 Holcombe Blvd, Houston, TX 77030
1-800-392-1611 (USA) 1-713-792-6161