Defining when and how to support palliative care communication: International consensus on timing and clinician training priorities for adolescents and young adults with cancer.

Abstract

12103 Background: Early, developmentally appropriate palliative care communication is an international standard for adolescents and young adults (AYAs) with cancer, yet remains inconsistently implemented. Clinicians report uncertainty regarding the optimal timing of palliative care discussions and around what training they need. This study aimed to establish international consensus on when key palliative care topics should be introduced with AYAs across the cancer trajectory and to identify clinician training priorities. Methods: A three-round international Delphi study was conducted with multidisciplinary health professionals who had worked with at least five AYAs who had died from cancer or its complications. Participants rated the appropriateness of introducing four palliative care communication topics (prognosis/goals of care, emotional/existential issues, quality of life, and end-of-life–related medical care) across prognosis levels and treatment phases. Participants also rated the importance of clinician training topics and likelihood of attending different training modalities. Consensus was defined a priori as ≥80% agreement. Results: Seventy-seven experts from 14 countries completed the final round. Consensus indicated that emotional and existential issues were appropriate to discuss early, including during active cancer treatment. In contrast, end-of-life–related medical decisions were considered appropriate later, most commonly following relapse, disease progression or poor prognosis. Discussions about prognosis, goals of care and quality of life were generally considered appropriate once cure was uncertain. Conversation timing was the only training topic to reach consensus as a priority (85.8%). Although no training modality reached formal consensus, learning from bereaved family members was the most highly endorsed approach (72.8%), followed by experiential and interdisciplinary learning formats. The presence of complex family or culturally and linguistically diverse dynamics did not fundamentally alter clinicians’ views on timing, but was associated with a need for greater team support and time. Conclusions: This international consensus provides clear guidance on when different palliative care topics should be discussed with AYAs with cancer and identifies timing as the primary area in which clinicians require additional support. Strong clinician endorsement of experiential and family-informed training approaches highlights opportunities to strengthen workforce capacity for earlier, developmentally appropriate palliative care communication.