“ Who will care for me when I get older? ” Facilitating difficult conversations with dying children and their families

At age 10 Riordan was exceling in his chosen sports and receiving awards for academic excellence. He lived with his parents and 12-year-old brother Jameson, with whom he shared a close bond. The family’s world changed when Rio was diagnosed with Diffuse Intrinsic Pontine Glioma, an aggressive form of brain cancer with minimal treatment options and an abysmal prognosis. His parents knew the disease trajectory from diagnosis and elected to shield Rio and Jameson from the prognosis for as long as possible. Rio’s parents consented to early referral to paediatric palliative care to assist with navigating their immensely difficult journey.

As Rio deteriorated and end of life was approaching his parents requested guidance to talk with both boys aboutRio’s disease progression and pending death, as they did not want to regret avoiding these challenging conversations. In doing this, the parents hoped to help their sons communicate what really mattered to them in the remaining time they all had together.

Toclarify the boys understanding of Rio’s continuous decline in physical function a trusted health professional offered Rio’s parents strategies to initiate these conversations. This presentation will demonstrate that although Rio had very limited verbal communication, with an interprofessional approach, this family was able to explore and understand their individual and collective experiences. The family were supported to openly share their grief, disappointment, love, treasured memories, spiritual beliefs and wishes with one another.

Being willing to lean into immensely difficult conversations, key health professionals (music therapist, psychologist, nurse practitioner) and school staff, worked with Rio and his family to achieve their goals which included graduating from primary school, baptism at home, memory creation, saying goodbyes and coordination of tissue donation. Rio was able to find peace knowing that his family would be there to care for him always and he had lived a whole-hearted life.