1274 When words aren’t enough: advance care planning alongside a young person with Rett syndrome

<h3>Background</h3> The 2024 Paediatric Palliative Care National Action Plan stated that creating opportunities for young people (YP) with life-limiting conditions (LLCs) and their families to have timely, accessible discussions around advance care planning (ACP) is a priority for Paediatric Palliative Care standards of care. ACP generally occurs serially, with gentle, curious deliberateness, and is revisited periodically with the intention of providing opportunities for a coordinated approach to capturing YP’s thoughts around treatment goals, end-of-life care, location of care, amongst a continuum of choices and preferences. For YP with LLCs, and all those involved in their care, there is a shared desire to listen to their healthcare goals and hopes and then, enabling same. When equipped with tools, such as Voicing my Choices and Paediatric Statement of Choices offering conversation frameworks about discussing end-of life wishes; clinicians hope to learn, to align, and gather these perspectives. Yet, when seeking to listen to the perspective of YP with LLCs who use a non-speaking communication modality, all involved then require a committed and creative approach to hearing and capturing care choices. <h3>Aim</h3> With the expressed permission of a young woman and her family, this presentation’s aim is to share their story of ACP. Taleah is an 18-year-old young woman, a much-loved daughter and sister, who resides in south-west Queensland. At two years, she was diagnosed with Rett Syndrome, a rare condition typified by progressive neurodevelopmental decline, with characteristic losses in language and motor abilities, along with difficult to manage seizures. In living rurally, Taleah has a love of the outdoors, nature, animals, music, books and draws solace from her faith. ACP discussions were prompted when focused conversations around Taleah’s transition to the adult health sector began. <h3>Contribution</h3> Taleah and her loved ones wish to share broadly how they undertook ACP and their resolve in the process of ensuring her wishes are heard. Their ACP story is bittersweet and inspiring as we consider the painstaking process required to capture Taleah’s wishes using eye gaze methods. Equally, it behoves deep reflection as we challenge assumptions about health literacy and clinicians’ bias surrounding the agency of YP who ‘speak’ differently when articulating their care goals. Rather than responding to a ‘so what’ question, this presentation begs deliberation on ‘why not’ when undertaking ACP with YP with LLCs, but also, broad consider of ACP for anyone in the community, regardless of age and how they communicate.