End-of-Life Goals-of-Care in Adolescent and Young Adult Cancer Patients: A Systematic Review

Area of Science:

• Oncology
• Palliative Care
• Adolescent and Young Adult Medicine

Background:

• Adolescents and young adult cancer patients (AYACP) face unique end-of-life (EoL) care challenges.
• Standard EoL care may not align with AYACP goals, necessitating a deeper understanding of their preferences.
• The characteristics of AYACP goals-of-care are poorly understood.

Purpose of the Study:

• To systematically review AYACP's desired involvement in EoL goals-of-care decision-making.
• To identify barriers and facilitators influencing AYACP's EoL decision-making process.

Main Methods:

• A systematic literature search was conducted across four major databases (PsycINFO, Web of Science, PubMed, Scopus).
• 23 studies were included following PRISMA guidelines, with quality assessed using the Mixed Methods Appraisal Tool.
• Thematic analysis and narrative synthesis were employed to conceptualize AYACP EoL goals-of-care.

Main Results:

• Four themes emerged: comfort-based care, life-prolonging interventions, understanding prognosis/legacy-building, and decision avoidance/delegation.
• Barriers included limited knowledge of options; facilitators involved exposure to interventions and EoL care information.
• AYACP expressed varied preferences for involvement in EoL decision-making.

Conclusions:

• AYACP goals-of-care are diverse and dynamic, requiring personalized approaches.
• Healthcare professionals should initiate early and regular EoL discussions and advance care planning.
• Integrating these discussions enhances AYACP quality of life and informed decision-making.