~5-minute read

“I wish it need not have happened in my time,” said Frodo.

“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

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The wizard Gandalf imparts this wisdom to the childlike hobbit Frodo in The Lord of the Rings trilogy of books. From Merlin to Mary Poppins, magical figures that guide children have filled books for ages. These mystical mentors help kids make sense of the fantastical worlds they inhabit. But those worlds are just words on a page.

Every day in the real world, children who have serious illnesses or loved ones with serious illnesses face such times as Gandalf alludes to. And like Frodo, they might struggle with their circumstances. They might need help understanding the story. But they might not have a Gandalf to guide them.

Certified Child Life Specialist Shaindy Alexander has over twenty years of experience at SickKids facilitating conversations about serious illness, death and dying. A member of the Paediatric Advanced Care Team (PACT), Shaindy is passionate about providing an extra layer of support to families and healthcare professionals (HCPs) when they need it the most. Her expertise helps HCPs become the beacon of guidance and clarity that a child might need.

Serious illness, death and dying are delicate subjects for any discussion, let alone with children. But as Shaindy said in a recent Paediatric Project ECHO session,

“It’s not a nicety—it’s a necessity.”

In the session, Shaindy discussed the roadblocks that can get in the way of the conversations, such as:

• The desire to protect children from emotional pain
• The fear of saying the wrong things
• The doubt about a child’s ability to understand such difficult subjects
• The belief that kids don’t want to talk about these things

There are many more potential barriers, but as Shaindy explained, these conversations are about empowering kids in their most challenging circumstances. Opportunities for dialogue can help them feel less isolated, more trusting of what adults are telling them and better able to manage the big, complicated feelings they might be having.

The conversational roadblocks can loom large, but there are paths around them, and Shaindy offered directions. She described asking kids about the 3 Ws, which are their:

• Wonders
• Worries
• Wishes

She also explained the 6 Cs in conversations about serious illnesses with kids. When they think about their or a loved one’s illness, a child may wonder:

• What’s it called?
• Did I cause it?
• Can I catch it or give it to others?
• Can I cure it?
• Who will take care of me?
• Will I always be connected to the people I care about?

Talking about the 3Ws and 6Cs allows HCPs to lead the conversation while also taking kids’ leads on what they may or may not want to talk about.

Some questions may be easy to answer, and some may be hard. In either case, kids and adults alike can find immeasurable value in children’s books. Though written for kids, these stories can inspire thoughtful ways for HCPs to shape the conversation and answer difficult questions.

One of Shaindy’s favourite books that serves as a first chapter in the conversation is The Invisible String by Patrice Karst. The Invisible String is about love’s unwavering power to keep people connected in any circumstance. In her clinical work, Shaindy likes to pair this book with matching stuffed animals for all members of a family. Through times of suffering and grief, the matching animals can remind families of the connections that will never be compromised.

HCPs can support the connections between patients and families by embracing the need for delicate conversations. The conversations develop chapter by chapter with each one nurturing a child’s story. But first, the book needs to be opened.

Every Frodo needs a Gandalf.

Join Paediatric Project ECHO for ongoing opportunities to learn from clinical specialists and exchange interdisciplinary knowledge. Submit a case to aid other HCPs in their quests to gain interprofessional skills and insights.

Login to watch the recording of Shaindy Alexander’s ECHO session.