End-of-Life Goals-of-Care in Adolescent and Young Adult Cancer Patients: A Systematic Review.
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BACKGROUND: 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. AIMS: This systematic review aimed to describe AYACP desired level and nature of involvement in EoL goals-of-care decision-making and determine their barriers and facilitators. METHODS: To address this, 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: 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.