“It’s my Body!”: Engaging Children and Adolescents Through Goals of Care Discussions on End of Life (206)

5:00 – 6:00 pm Thursday, October 28

Childhood and adolescence are a time to navigate autonomy, yet our medical system looks to parents to make “official” decisions until children are 18 years old. The American Academy of Pediatrics recommends children and adolescents with life-limiting illnesses be provided an opportunity to participate in decisions affecting their care in a developmentally appropriate manner.

Children as young as 4 years have developed a general concept of death, with their depth of understanding expanding over time, and have demonstrated an ability to participate in end-of-life decisions. Children and adolescents often worry about protecting their parents, which can create concerns about having their needs met and wishes known. We can get a glimpse into how these patients wish to move forward in managing their medical complexity using trained professionals, tools such as Voicing My Choices, and varying types of self-expression, but must be mindful of the delicate family dynamics and wishes of parents in choosing to disclose particular information. The Voicing My Choices tool, developed for adolescents, has shown to help facilitate open communication between families and providers regarding how the adolescent would wish to be cared for in the event they could no longer speak for themselves. This tool allows clinicians to assess the adolescent’s understanding of his/her own illness trajectory, which may better enable clinicians to advocate on behalf of the adolescent’s wishes. This presentation will explore the child’s progressive developmental understanding of death and will use clinical vignettes in introducing discussions related to the child’s preferences for the end of life. Video vignettes will demonstrate how the Voicing My Choices tool is used with an adolescent. Pediatric oncology nurses are uniquely situated to assist and align families through establishing shared goals of care while considering the wishes and desires of the child.

CNE Hours: