Background:

Adolescents and Young Adults (AYA) with a life limiting cancer illness are recognized as a distinct population within the broader palliative care sector as the timing of ill-health coincides with a critical time for a young person’s growth and development leading to far-reach consequences across physical, emotional, psychological and social domains. In 2022, the state government funded the development of a Framework to set the direction for AYA palliative care. The framework aims to ensure that clinicians, consumers and services work in partnership to deliver care that is high quality and youth-responsive. 

Methods:

Informed by a steering committee, the project methodology included: AYA cancer palliative care literature; extensive consultation with consumers, health sector and related stakeholders, and other non-oncology services managing AYA with a life-limiting illness; review of relevant policies, legislation and frameworks. Extensive analysis was performed identifying themes to inform the development of the AYA palliative care vision and priority areas. 

Results: 

Over 50 consultations were conducted spanning AYA, oncology, palliative care and consumer expertise across metropolitan, regional/rural and paediatric or adult settings. When combined with extant literature and policies, four priority areas were identified guiding the delivery of AYA palliative care: 1) Person and family inclusive palliative care (including advance care planning and end-of-life discussions, support for carers and bereavement considerations) 2) The delivery of multidisciplinary care by skilled health professionals (including communication strategies, training and education) 3) Young people receive services that are high quality and coordinated (covering transition points and collaborative partnerships) 4) Research and data driven improvements in palliative care for young people. 

Conclusion: The AYA Palliative Care Framework will guide the delivery of safe, high quality, and consistent care for young people with a life limiting cancer illness as well as identify future priorities for the state for this emerging subspecialty.