Objectives/Purpose
Adolescents and young adult cancer patients (AYACP) with terminal diagnoses face the challenge and additional burden of planning their end-of-life (EoL) care. Although AYACP receive a standard-of-care at EoL, the care they receive may not align with their goals. As such, the characteristics of their goals-of-care are poorly understood. This systematic review aimed to identify AYACP involvement in EoL goals-of-care decision-making and determine their barriers and facilitators.
Procedures
An extensive search across PsycINFO, Web of Science, PubMed, and Scopus databases was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, yielding 23 studies from an initial 4211. The Mixed Methods Appraisal Tool was used to assess quality and risk of bias, while a thematic analysis was conducted to conceptualise AYACP EoL goals-of-care, which were presented through a narrative synthesis.
Results
Four key themes of AYACP EoL goals-of-care emerged: (1) preference for comfort-based care, (2) preference for life-prolonging interventions, (3) understanding disease prognosis and involvement in legacy-building, and (4) choosing not to decide and delegation of decision-making. AYACP reported that limited knowledge of available options was a barrier to decision-making, while exposure to interventions and EoL care information facilitated EoL goals-of-care discussions with family and healthcare professionals.
Conclusion and clinical implications
This review emphasises the diverse and evolving nature of AYACP goals-of-care and invites healthcare professionals to integrate early and regular discussions along with advance care planning to enhance quality of life and informed EoL decision-making.