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.
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DOI：
10.1002/pbc.24490
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发表时间：
2013-05
影响因子：
3.2
通讯作者：
Pao, Maryland
中科院分区：
文献类型：
--
作者：
Wiener, Lori;Zadeh, Sima;Wexler, Leonard H.;Pao, Maryland
管理临终关怀（EoL）总是一件耗费感情的事情。关于预后和EoL决策的诚实讨论经常被推迟，原因是关于青少年和年轻人（AYA）自己做决定的法律能力的问题，提供者感到没有准备好或没有足够的技能来指导EoL讨论，或者父母担心讨论计划，包括生命支持选项或提交EoL规划文件可能会发出医疗团队希望撤回护理或死亡迫在眉睫的信息。数据表明，允许AYA参与EoL计划可以帮助父母和医疗保健提供者做出明智的决定，减轻痛苦，避免决策后悔，并可能通过尊重患者的价值观、信仰和偏好来改善患者的生活质量（QoL）[2-4]。这篇评论论述了该领域的最新进展，并着重于医疗保健专业人员如何与AYA一起进行预先护理计划（ACP），让他们的家庭成员参与，并让整个医疗保健团队参与。
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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