Department of Pediatrics, 12277Duke University School of Medicine, Durham, NC, USA.
169142Duke Clinical Research Institute, Durham, NC, USA.
J Child Neurol. 2021 Oct;36(12):1120-1127. doi: 10.1177/08830738211045238. Epub 2021 Oct 22.
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.
许多儿童神经疾病都是在围产期首次诊断出来的,这会缩短或严重改变患病婴儿的生命。新生儿神经舒缓医疗将神经科和舒缓医疗的核心实践和教学结合起来,针对的是在产前和新生儿期受到严重神经疾病影响的患者及其家庭。这篇综述概述了希望在产前、新生儿重症监护病房和出院前后提供神经舒缓医疗方法的神经科医生需要考虑的关键因素。我们探讨了神经舒缓医疗的 4 个核心领域:(1)以家庭为中心的沟通,(2)预后,(3)决策,以及(4)疼痛和症状管理。我们还讨论了临终关怀和在不同文化和实践背景下的特殊考虑因素。