Background Early integration of palliative care for adolescents and young adults (AYA) with cancer improves outcomes for patients and families and reduces healthcare utilisation toward the end of life. As AYA oncology evolves, we require innovative models to achieve equitable access to needs-based palliative care for this heterogenous and geographically-dispersed population.

This CCC exists within a multi-hospital precinct and houses the state-wide AYA cancer service and an integrated palliative care service (IPCS) comprising outpatient clinics, inpatient consults, and palliative care units (PCU). Since 2020, there has been a formal collaboration between oncology and the IPCS; internal publication of an AYA palliative care framework; attendance of palliative care physicians at weekly AYA interdisciplinary meetings; and addition of physicians with paediatric training on IPCS staff. Given these resources, we aimed to understand how they are being used for AYA.

Aim To describe the model of palliative care provision for AYA decedents known to an Australian comprehensive cancer centre (CCC) between 2020 and 2023.

Methods This was an ethics-approved, retrospective examination of medical records of all AYA treated at the CCC who died in the defined time period. Policy changes and staffing models designed to improve palliative care for AYAs are included for context.

Results There were 37 AYA treated at the CCC who died between January 2020 and March 2023 (62% male, median age at death 23 years). Of these, 33 (93%) were known to the IPCS with a median of 4.2 months from referral to death. AYA moved among IPCS care settings with 27 cared for in outpatient clinics, 25 known to the consult service, and 11 spending time in PCU. AYA were also referred to community palliative care services (n=27; 73%).

Outpatient care through the IPCS varied in structure and mode of delivery. AYA had a median of 12 outpatient contacts and met, on average, two different clinicians. The IPCS provided stand-alone appointments (n=22), joint consultation with other medical services (n=17), and joint (n=9) or secondary consultation (n=13) with community palliative care services.

Despite IPCS involvement, AYA had high healthcare utilisation in the last 30 days of life with a total of 254 days spent on acute oncology wards, 20 presentations to emergency, and four admissions to the intensive care unit. In this time, 19 AYA (51%) had input from the IPCS consult service and 11 (30%) were admitted to PCU. Locations of death were acute hospital wards (n=12, 33%), PCU (n=11, 30%), home (n=6, 16%) and ICU (n=2, 5%).

Learnings, practice implications, and future directions

• Integration between our palliative care and AYA cancer teams has improved opportunities to optimise palliative care for AYA.

• Flexibility in the mode and nature of palliative care delivery is important to meet young people ‘where they are’.

• We need feedback from AYA and their families about how our model is meeting their needs.