Aims
Adolescents and young adults (AYAs) aged 15-39 with cancer have distinct palliative care needs, yet there is limited guidance on the optimal timing of palliative and end-of-life communication across the care trajectory. To improve the integration of timely palliative care for AYAs, this study aimed to establish international consensus on 1) when key palliative care discussions should ideally occur, and 2) how this differs according to patient prognosis and the communication topic being introduced.
Methods
A three-round Delphi study was conducted with multidisciplinary health-professionals experienced in AYA oncology. Participants rated the appropriateness of introducing four communication topics-prognosis and goals of care, emotional/existential issues, quality of life, and end-of-life–related medical care across prognostic categories and disease trajectory timepoints. Consensus was defined as ≥80% agreement.
Results
A total of 234 participants completed the Delphi first-round from 7 countries (Australia, New Zealand, USA, UK, Belgium, Spain and India), with 77 completing all rounds. Participating health-professionals from >5 disciplines (18% oncologists) worked across paediatric (43%), AYA (23%), and adult (24%) healthcare settings. A consistent staged pattern of communication emerged. Emotional/existential discussions were considered appropriate early in care, reaching consensus even when estimated survival exceeded 75% (89.6% consensus) and during active cancer treatment (88.2%). Prognosis/goals-of-care discussions were considered appropriate once estimated survival declined to 50–75% (93.5%), whereas end-of-life medical discussions were considered appropriate later in the disease trajectory, reaching consensus only at lower survival probabilities (25–50%; 92.2%) and by second relapse (93.4%).
Conclusions
Rather than a single event, palliative and end-of-life communication with AYAs can be conceptualised as a staged process across the cancer trajectory – with vital opportunities to integrate these discussions at key timepoints alongside active treatment and clinical trial participation. Our findings provide a consensus-based framework to support more person-centred, precision palliative care communication along the cancer care trajectory.