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Adolescent end-of-life care: The most important voice may not be the loudest
Oral Presentation
October 14th 2022 at 9:30am
Institution: Royal Children's Hospital- Victoria, Australia
This presentation will reflect on our clinical experiences with supporting an adolescent oncology patient – the youngest sibling of a large family – who was devastatingly told that his disease was no longer treatable and that he only had months to live, after enduring intensive treatment and an unsuccessful bone marrow transplant. This patient had a complex psychosocial history that was further complicated by traumatic experiences of death and grief within a largely disconnected family unit.
This young man bravely wished to be informed of all facets of death and dying and wanted this same information to be provided to his family in a safe and protective way that avoided causing further trauma to his loved ones. He wanted his remaining time to be spent focusing on what was most important to him – reconnecting a fractured family unit.
Respecting this young person’s wishes and supporting him to spend his remaining time in the way that he chose to, including the location of his end-of-life care, required listening carefully to his voice amongst a room of much louder voices that tended to silence, overwhelm and disagree with his. He preferred to avoid conflict to protect his family and needed advocacy from his care team to facilitate open discussions about his wishes, his bucket list, his death and funeral in order to minimise his distress.
Using the developmentally appropriate ‘Voicing My CHOICES’ (VMC) communication tool was key to facilitating vital discussions and a safe space to ask difficult questions. We will share how the VMC was used and the challenges that were encountered, including the differing expectations of the VMC within the family unit. We will discuss lessons learnt relating to how the tool can best be used with this cohort in order to provide leadership to the CCC greater team.
