When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices

When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care choices

Wiener L; Zadeh S; Wexler LH; Pao M

Pediatric Blood & Cancer

2013

Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for themselves [1], providers feeling unprepared or without adequate skills to guide EoL discussions, or parental concern that discussing plans, including life support options or presenting an EoL planning document may send the message that the medical team wishes to withdraw care or that death is imminent. Data suggest that allowing AYA involvement in EoL planning can help parents and healthcare providers make informed decisions, alleviate distress, avoid decisional regret, and perhaps improve the patient’s quality of life (QoL) by respecting their values, beliefs ,and preferences [2–4]. This commentary addresses recent progress in the field and focuses on how healthcare professionals can approach advance care planning (ACP) with AYA, involve their family members, and engage the entire health care team.

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