Helping Kids Through Terminal Illness

Helping kids As a certified Child Life Specialist, Shaindy Alexander gives emotional support to kids and teens in the palliative care program at SickKids. She uses play to create a safe outlet for their “wonders, worries, and wishes.” © ALL IMAGES COURTESY OF SHAINDY ALEXANDER.

SickKids Child Life Specialist Shaindy Alexander writes about how she supports young patients through the worst diagnoses.

Evelyn* was 11 years old when she was referred to the palliative care program at SickKids. She’d become ill two years earlier. She understood her diagnosis and sometimes asked questions about her disease and the treatments. But often, she preferred not to talk about “the hard stuff.” Evelyn and her family were focused on living each moment as best as they could, even amid the physical limitations of Evelyn’s disease and the restrictions of the pandemic. Evelyn used her imagination as an outlet for emotional expression. She painted, wrote songs, and made crafts. She wanted to ensure her family could later reflect on the fact that she understood that she might die young and chose to live each day to its fullest.

I was Evelyn’s Community Psychosocial Support provider, a donor-funded, home-based service for palliative care patients. Together, we made gifts for loved ones. We sculpted difficult dreams and events with playdough—and then squished them. We made calming jars to remind her to take deep breaths when she felt anxious. We played games to get lost in the moments of just being a kid. When Evelyn was closer to her end of life, she felt supported and ready to ask questions about death and dying: How do you know that I won’t be buried alive? What happens after you die? Will I feel pain? She made handprints for family members and told her parents how she hoped they would celebrate her birthday each year.

As a certified Child Life Specialist, I use play and creativity to build rapport and support patients dealing with difficult medical and life events. Children and teens speak a different language than adults. A skilled interpreter must be present during serious illness to ensure young people are fully included and supported in their journey.

While patients are in hospital, this kind of emotional support is readily available. But at home, children and teenagers are offered varying levels of support depending on the capacity of their stressed parents, relationships with friends and family, and the competency of community supports, which can be limited. In 2019, my role emerged out of this need, first as a pilot. Now, two years later, our surveys show overwhelming support for this program.

There’s no disputing that these patients and siblings benefit from having someone on their medical team available purely for their emotional well-being—to explore their wonders, worries, and wishes. Someone to partner with them, help advocate for their needs and wants, and explore ways to enhance their quality of life. During the isolation of the pandemic, my support—largely virtual—felt more important than ever. Although there’s ample research about the benefits of home-based medical support for children with serious illnesses, there’s limited research about psychosocial support at home. From my vantage point, I can say it’s crucial. Providing specialized emotional support is not a nice addition to the care team—it is essential to delivering good patient care.

Shaindy recounts this story and others in an episode of the SickKids podcast (Season 3, Episode 6), which takes listeners to the frontlines in the fight for child health, sharing stories of hope, heartbreak, and medical breakthroughs.
(*)Name changed

Helping Kids - SickKids Shaindy and one of her patients, Kristey, made handprints and gifts for her family. Crafts and play are an important part of Shaindy’s job.
Shaindy and one of her patients, Kristey, made handprints and gifts for her family. Crafts and play are an important part of Shaindy’s job.

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