Abstract：
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
摘要：
许多NICU已经达到了一个转折点，即生命维持治疗受限后的婴儿死亡人数超过复苏失败后的死亡人数。许多存活下来的婴儿仍然需要大量的支持。患有严重疾病的此类婴儿的家庭可能会受益于标准化，决策支持中的面向过程的方法。预先护理计划（ACP），或支持患者的沟通，或者他们的代理决策者，分享价值观，目标,以及对未来医疗的偏好，被认为是支持患有严重和慢性疾病的成年人的有价值的策略。尽管ACP在大龄儿童和青少年中的作用正在演变，其效用尚未在围产期背景下进行系统探讨。本文通过定义ACP和评估最近的结果研究，为形式化ACP在NICU中的作用建立了一个案例，审查NICU中父母对决策支持和严重疾病的需求的现状，并描述了ACP如何解决当前初级和专科儿科姑息治疗的局限性以及新生儿期决策的挑战。
