How to Talk to Kids about a Terminally Ill Parent – Dr. David Schonfeld

I had the pleasure of speaking with Dr. David Schonfeld about the process a family endures when losing a loved one to a terminal illness, from the perspective of a child. When do you let a child know a parent is sick? How much information do you share? How can you identify post traumatic growth versus disorder? I hope you find our conversation helpful. – Estée Pouleris

Estée: Dr. Schonfeld, can you put some framework around how to approach a conversation with a young child about a parent suffering a terminal illness? I’m sure this varies by age – let’s begin with young elementary aged kids and the journey they’re about to embark – watching a loved one die.

Dr. Schonfeld: Well I think the first thing to do is to recognize that it’s important to tell children about a significant illness that affects a family member or a close friend as soon as you know about it. You don’t want to wait and have the conversation when the illness is very progressed  – and if you have the ability to inform the child about the illness earlier in it’s course, it’s a good idea to start then because then you can give the child the basic information and help them understand what the illness means and what impact it may have on the person who is sick as well as the rest of the family.

Estée: Okay, so even if you’re not sure if it’s terminal at that point, if you’re going through for example breast cancer – the child should know what you’re going through?

Dr. Schonfeld: I think it’s very important for kids to understand significant things that are happening in the lives of family members and close friends. And the example I often use – is waiting to tell a child about the a very serious illness when you think there’s a limited lifespan left is kind of like waiting to talk about sex on the night of a wedding – it becomes a very awkward conversation that is difficult for both parent and for the child – it’s unlikely the child hasn’t figured out something beforehand and acted on it. And it’s just very difficult to cover all that information. So if you think about it, it’s best to talk with children about sexuality when they’re toddlers. You just introduce the name of body parts and tell them what they do. And they kind of grow into their knowledge of it. And it’s easy to start the conversation. When you get to the more difficult aspects of the conversation they’re prepared, and the adult is prepared.

There’s also the situation that if you don’t tell children important information until very far into the course of an illness they’re likely to figure out something on their own or they’re likely to realize you’re not disclosing everything to them. And then it’s hard for them to develop the trust and it’s hard for them to know that if something serious were to happen you’d be willing to tell them about it. So I think its very important to start the conversation early.

Cancer actually affects about 1 out of 3 Americans and 2 out of 3 families. So I actually suggest you explain cancer at a very young age so they can understand the prevalence of illness. And most cancers are treatable. Most are curable. Particularly the ones that effect children. Cancer is a very common health problem and likely to impact someone in the family at some point.

Estée: So when you say at a very young age, what is that age 5? 7? 3?

Dr. Schonfeld: Part of it is when it comes up naturally in the conversation, or when it’s in the news or when somebody is impacted by it. I actually wrote a curriculum for Kindergarten thru sixth graders. It focused on cancer prevention. The three areas it focused on were: sun exposure, healthy diet (decreasing fat, increasing fiber) and tobacco prevention. That was done in the context of a health education curriculum to help them understand why these healthy measures are important. I found kid as young as 5 and 6 wanted to learn. And they had heard about cancer and had some misconceptions and misunderstandings and were happy to learn about it.

Estée: Sun, diet and tobacco are all conversations I’m actively having with my 5 year old so connecting it to cancer prevention feels like it could easily be incorporated.

Next questions, if there is someone in the family who is terminally ill do you have a preferred recommendation of who has the dialogue with the child? Is there a preferred method on how to go about this conversation?

Dr. Schonfeld: It varies a great deal. It depends on if the child has already started the conversations, if so it makes sense to continue the conversation with the same parent and family members.  It also can be difficult if a family member is very ill for them to have the conversation so you have to take that into account. There are situations where health care workers or a pediatrician can talk with children about the illness. But my preference is that children particularly elementary aged and up trust parents and other close family members most so ideally you want those people to take the lead. There are situations where it’s helpful to talk to a physician or to an adult who has some expertise on the health condition being discussed that also isn’t a member of the family. Children often try and protect other family members who are in distress so they may put off asking their questions because they don’t want to cause discomfort in their parents or another adult. If a child asks a question and an adult finds it to be poignant and resonates with them because of their own distress, concerns or worries and they become tearful, the child may conclude they said something bad or naughty and that they upset their parent or adult and they may decide not do that again. So kids will often turn around when parents show distress during these questions to try to reassure them to a point that actually misleads parents into thinking their children aren’t having distress.

Estée: How involved should a child be in the treatment plan or aware of the treatment plan- and I’m asking this question from the point of ‘can the child feel responsible for the parent’s death since the treatment ultimately doesn’t work since the illness is terminal?’

Dr. Schonfeld: Well the first thing to keep in mind when talking to children about a potential life limiting condition is:

• you’re really trying to explain what the illness is
• what direct implications it has
• and that you’re concerned it may not be treated effectively

You’re not trying to prepare them for death or to predict a particular time course for death. It isn’t so much you’re talking about it as a terminal illness as you’re educating them and informing them about the illness and letting them know it’s serious and that’s why people are concerned.

Now children may ask if this is something you can die from. I wouldn’t mislead them but I’d say, especially to young elementary school aged child, most cancers are actually treatable and most are cured but some cancers are not always treatable and we’re concerned this may be one that we may not be able to treat. And that’s why mom and dad are so sad right now because this family member is very ill and we’re not sure we’re going to be able to make her better. The doctors and nurses and everyone in the family is doing everything they can to keep her as healthy and as comfortable as possible for as long as possible. So, I don’t think you’d be predicting death to children. And when people have a potentially life limiting illness, even children themselves – their focus is predominantly on maximizing the quality of the life that they have – rather than preparing for the death. So that would be the focus with the child and if the child is then able to participate in doing something that is comfortable to them and is helpful to the sick individual then that can be very helpful, with a couple caveats. Make sure you’re providing opportunities for the child to be helpful and to provide assistance that feels comfortable to the child. I wouldn’t ask or coerce a child to assist in something or engage them in seeing something that makes them upset like assisting certain types of wound care that makes them uncomfortable or seeing their parent in a very compromised state that makes them uncomfortable. You want them to be able to do something they feel comfortable doing that is helpful. You also then want to clarify that you want them to do what they feel they can and wish to do but you want them to still have their own life and engage with peers. A lot of times these illnesses last over a period of years. And that’s a very large portion of a child’s life. You want to make sure they realize it’s okay to do things kids do sometimes and be able to go be with their friends and engage in extracurricular activities. Some of that is compromised by the stress that the family is under. But to the extent that you can continue to do that is helpful. And then I think it’s a good point to make sure even though you’re asking the child to help, they’re not responsible for the course of the illness.

I remember talking with one child bereavement expert, she did a lot of work in children’s understanding of death, she’s one of the people most known for her work in this area.  She said in the workshop she had an experience with her own child – one of her parents was seriously ill and in hospice at the time. She suggested her son, who was an elementary aged child come to hospice to visit his grandfather because his grandfather really appreciated his jokes and humor and made him feel better. So her child went to hospice and visited with his grandfather. And the next day his grandfather died. After that the boy kept asking why his grandfather died, and the mother explained what the illness was and how that caused death. After a couple nights it continued happening at bedtime, he kept asking the same question and she kept giving the same answer. Finally she said this is really hard for me to talk about because it was her own father who had died. So she turned to her husband and asked if he could take him to bed this time. She didn’t think she could handle the questioning again. So the father went in and talked with him and the boy asked why his grandfather died. And then the father explained it and then asked why he kept asking. The boy said well I went to the hospital and I tried to make him feel better and I didn’t and he died. So he was feeling responsible. If children keeps asking the the same questions or seems to show some distress or concern, we should ask them what they’re concerned about, with some probing we may understand. But I also think it’s important to realize when someone dies children often feel not only badly but worry they did something bad. l usually say to them when someone dies we often wonder what it is we did, could have done, didn’t do or should have done that would have changed it. I often ask ‘I know it wasn’t something you did or didn’t do that was responsible fore the death of the family member, but I wonder if you feel that way?’ A lot of kids tell me they do. A lot of kids tell me they feel guilty. I’ve been doing this work for 30 years and I’ve had about 2 or 3 situations where I haven’t found the guilt. It’s just so universal.

Estée: So knowing a child is going through this and the likely hood of them feeling a degree of guilt or responsibility at some point, given that’s natural – what are your thoughts on therapy being mandatory for a child during this journey?

Dr. Schonfeld: You should definitely have somebody talk to the child who is not an immediate family member but has a good relationship with the child and understands child development. That could be somebody from a faith based organization, it could be a school counselor or a pediatrician.  Someone to just check in with the child and see how they’re doing. It’s not necessary to have them in therapy but you want to make sure they understand what’s going on to a reasonable degree, they have their questions answered and any misconceptions cleared up. For example a lot of kids think cancer is contagious. They may worry they have it. You want to try to identify what they understand and what they don’t understand and what’s concerning them. And then also ask how they are adjusting.

Estée: What if you check in and the child is showing signs that maybe they do need some help processing this experience? Whether they are in the middle of the journey of a parent getting sicker or perhaps they’ve already lost the parent. What are some signs that indicate they may need some professional help?

Dr Schonfeld: First off, you may see no signs, they are internal feelings. The absence of signs shouldn’t be reassuring. It is important that someone periodically check in with the child to see how they’re doing. In terms of additional signs you could look for: is the child is having difficulty in day to day functioning, grades are slipping, some kids launch themselves into school work to a greater degree so they don’t have to think about the illness. Some kids feel if they are really really good this won’t be happening. If you see a change in their day to day functioning you want to explore what that is. They may avoid things they previously enjoyed. Say a teenager doesn’t want to go to parties anymore. They may say I know what life is about and people drink at parties and it’s stupid. It seems immature to me now. And on some levels the family doesn’t want the child to leave. They like the child home. Sometimes the child is providing support to surviving members. They encourage the child to stay home.  Sometimes this actually is maturity. But often times they’re afraid to be separated from their family members. And they’re not comfortable hanging out with their peers especially places like parties where people are happy. So what I usually say to kids is ‘what are you doing instead with kids your age?’ If they say volunteering at church, doing community service, working with homeless, volunteering at hospital because I want to be a physician. If they’re showing post traumatic growth and maturing and doing things that brings them in contact with like-minded peers then that’s fine. If they’re just doing nothing then I think you need to challenge them a little bit. Because the issue is if you don’t hang out with peers you don’t develop good peer relationships and that’s a problem even when you’re an adult. Other signs: difficulty with sleep, falling or staying asleep, nightmares, trouble waking on time, changes in eating patterns, headaches, stomach aches, fatigue, anxiety and increase in fears. Really changes in day to day functioning, adjustment, coping and social function of your child.

Estée: Okay, here’s my last question and even as a 43 year old I don’t now how I feel about it. Home hospice is becoming more common again. How do you feel about a child being present when a loved one passes at home hospice?

Dr. Schonfeld: I think if you’re doing home hospice then yes a child could be present. The home hospice care workers are usually there at the time of death and they are making sure the patient is as comfortable as possible. And trying to ease them through that experience. If someone slowly stops breathing or takes their last breath and a child is present, I don’t see that as a problem. What you don’t want a child to see is a family member hemorrhaging to death, screaming or choking. Those are difficult things for anyone to see. The idea around hospice is to make everything peaceful and in large part creates an environment for all family members to be present and brings support to the one dying too.

We’ve changed as a culture. We used to die at home and have viewings at home. Families including children witnessed the transition from life to death. Then we started putting dying people in hospitals – keeping children from it. It’s created more concern and anxiety about the death experience and funerals for children. We’ve even taken realistic portrayals of death out of a lot of literature. We show horror films to children – which is NOT the way to learn about death, but non traumatic realistic portrayals of death don’t occur very much for children. Even the way we talk about death – most people don’t realize they’re doing it.

The first game about death virtually all children play where they’re learning about object permanence is peek-a-boo. It’s a game about death. The person disappears as if they’ve died. The child shows heightened awareness and concern. And then there’s joy at the reunion. Children are driven to play this game, between 9 months and 15 months you will have their attention. Peek-a-boo translates in Old English to alive or dead. Everyone plays the game but adults don’t even now what it’s about. Children at a young age already understand that something can be lost that’s important to them.

For some reason our culture has decided to withdraw conscious discussion about death with children from the norm. And I actually think that just makes it more difficult for them. If it’s something you can’t talk about it becomes something that’s very hard to understand. The absence of understanding and open conversation makes it frightening and extremely difficult for children to ask for help.

It’s always a difficult to experience the loss of a loved one, and it ought to be. But it’s harder when it’s associated with guilt and other concerns.

David J Schonfeld, MD, FAAP – Dr. Schonfeld is a developmental-behavioral pediatrician and Director of the National Center for School Crisis and Bereavement, located at the University of Southern California School of Social Work. He is Professor of the Practice in the Suzanne Dworak-Peck School of Social Work and Pediatrics at the University of Southern California and Children’s Hospital Los Angeles.