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Morning Shift

Thursday: Each Patient — And Family — Prepares For The Unthinkable Differently

When a child is terminally ill, parents know there is a difficult conversation to be had. It’s one they hoped they never would have. When even adults have a difficult time grasping death, how should we talk to children about it?

As part of a weeklong series about how we talk about death, Morning Shift spoke to Megan O’Connell and Sara Stewart, who work as certified child life specialists at Ann and Robert H. Lurie Children’s Hospital, about their work addressing the emotional needs of families.

Child Life Specialist Megan McConnell working with a patient at Ann and Robert Lurie Children's Hospital. (Courtesy of Lurie Children's)

Here are some highlights from that conversation.

On picking up where the doctor’s conversation left off with the family

Sara Stewart: Our role is to kind of go in after and pick up the pieces, figure out what did they actually take from that conversation, and what do they understand? So ask questions such as: What do you understand that’s happening to your body? And relate it to the physiological things that are happening and provide emotional support.  

Megan O’Connell: We sort of get at death and dying from a really concrete place, and then, “Why me?” — those sort of questions that come up after that are more spiritual or just on a deeper level. That’s where our work with the parents really comes in, and consulting with them about what are your belief systems and really helping them to lead that conversation.

On what signals parents should watch

Stewart: When kids become really withdrawn, or maybe they’re not engaging, not appearing to be how they always have been in the past, you can tell that something is going on in there and you want to get to it. You want to figure out what the kid understands what they think, how they’re feeling about this.

On why parents should be prepared to talk candidly with their children

O’Connell: A lot of times, we’re helping parents work on scripts, we’re letting them bounce ideas off of us, we’re giving them tools because all of this information is best when it comes from their person, if it comes from their trusted adult, whether it’s a parent or that aunt or the best friend or whoever. 

This interview has been edited for brevity and clarity. Click the "play" button to listen to the entire interview. 

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