Recently, Laura Moynihan, a social worker for HopeHealth’s PediPal program and Pediatric Support Services, was visiting with a 6-year-old patient who was nearing the end of life. Out of the blue, he shared that his grandma was in heaven. In the years Laura had been caring for him, it was the first time he’d mentioned her.
Picking up on the cue, Laura asked why it was on his mind. He replied, “Well, I’m going to be in heaven soon too.”
No one had told him that he was dying. But he had sensed what was happening in his body. And he needed a safe space to talk through his thoughts and questions.
If your child is seriously ill and may be ready for a similar conversation, here’s how you can support them.
> Related: Activities to prepare your child for the death of a loved one
Create opportunities for your child to open up
Spend time together in ways that make talking easier. Try going for a walk, sitting together outside, or playing a simple game like Jenga or UNO. These activities provide enough of a distraction that kids often let down their guard, and it gives them an easy way to take a break from heavy conversations.
For younger kids, read a recommended children’s book about death and dying. Try Wherever You Are, My Love Will Find You; Just in Case You Ever Wonder (note: features religious content); The Invisible String; and Sun Kisses, Moon Hugs. “I had a 5-year-old patient whose parents read her one of these books at bedtime,” says Laura. “At first she went to bed and said nothing. But then she brought it up a month later, after she had processed it.”
For teens, try going for a walk or drive. Teens tend to appreciate the excuse to avoid eye contact, especially during difficult conversations. “Most teenagers are going to say a lot more if they don’t have to stare you in the face while they’re saying it,” says Laura.
> Related: 5 benefits of adding pediatric hospice when your child is seriously ill
Help your child start a conversation about death and dying
Be ready for your child to “open the window.” Your child may approach the topic of death and dying indirectly, as a way to make sure you’re OK talking about it. It’s why Laura’s 6-year-old patient mentioned his grandmother in heaven. Listen for those hints, and try saying something like, “It sounds like you’ve been thinking about this a lot. Why is it on your mind?”
It’s OK to be direct. When one teen asked Laura for her opinion on reincarnation, she sensed the question behind the question. “I’m curious: Why are you asking?” she said. He admitted, with some relief, “I’m wondering what’s going to happen after I die.” Her direct question gave him the opening he needed.
You can open the window too. If you sense that your child may want or need to talk about dying, but is having a hard time bringing it up, you can test the waters with a question of your own. For example, you might ask, “Your cancer has been growing really fast. What do you think is happening with your body?”
> Related: Honoring a life: Remembrance items for a child who is seriously ill
During the conversation, follow your child’s lead
Let your child guide the conversation. Maybe they’re wondering what happens after they die. Maybe they want reassurance that they’ll still be connected to you. “When kids bring up the word ‘die’ for the first time, they’re not necessarily seeking concrete medical information,” says Laura. You can help by simply encouraging them to share their thoughts and emotions, while letting them set the pace.
Stop when they need a break. One teen wanted to talk with Laura about how his family would cope with his death. After about five minutes, he abruptly changed gears and asked a silly “would you rather?” question. Laura went with it. “Teens in particular can only tolerate so much in terms of the length of a conversation,” she says. “When they show you they need a break, roll with it.”
Short conversations are valuable too. Many kids don’t need or want a big family discussion. Instead, it can be as simple as a child asking, “Where did the cat go after it died?” and talking about it for a few minutes before moving on. “These small conversations accumulate over time to build a solid foundation for kids to understand that they’re dying and make sense of what’s happening,” says Laura.
> Related: What is pediatric hospice care, and how is it different for kids?
Other advice for parents and family members to keep in mind
It’s normal for kids to talk to someone else first. “I think nurses, social workers and chaplains are often the first people to whom kids will bring up dying,” says Laura. “They’re testing the waters. They don’t have to worry about our emotional reaction. Most of all, they are trying very hard to protect their families.”
Check in with yourself. While it’s healthy for your child to see your emotions, you want to be in control so you can focus on supporting them. One parent knew she wasn’t in a good place when her child brought up death at bedtime. Instead of diving into the conversation, she took a day to process her own emotions, including a phone call to Laura. The next evening, she brought it back up with her child. “You know your question last night? I’m really glad you asked,” she said. “Let’s talk a little more about it.”
Lean on your child’s palliative or hospice team. Some families want to have these conversations on their own. Others reach out to their child’s palliative care or pediatric hospice team for help preparing, or to lead the conversation when everyone is ready. Our social workers, chaplains and child life specialists are here to help in whatever way feels right to your family.
For the 6-year-old patient who told Laura he was going to be in heaven soon, having a safe space to talk about death and dying was a profoundly comforting experience. Laura eventually asked if he wanted to talk to his family too. Once she reassured him that his parents would be OK, he said yes.
“We used that initial conversation to guide what ended up being a beautiful conversation for the family,” says Laura.