Department of Medicine, Pediatrics, and Neurology, University of Rochester Medical Center, 601 Elmwood Avenue, Box 687 , Rochester, NY, USA.
Department of Pediatric Palliative Care, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Neurocrit Care. 2024 Dec;41(3):739-748. doi: 10.1007/s12028-024-02076-1. Epub 2024 Aug 13.
Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload, and multiple potentially life-altering decision points. In addition to clinical acumen, families desire clear and consistent communication, supported decision-making, a multidisciplinary approach to psychosocial supports throughout an admission, and comprehensive bereavement support after a death. Distinct from their adult counterparts, pediatric providers care for a broader set of rare diagnoses with limited prognostic information. Decision-making requires its own ethical framework, with substitutive judgment giving way to the best interest standard as well as "good parent" narratives. When a child dies, bereavement support is often needed for the broader community. There will always be a role for specialist palliative care consultation in the pediatric neurocritical care unit, but the care of every patient and family will be well served by improving these primary palliative care skills.
儿科神经危重症护理团队负责照顾那些面临严重神经功能损伤和高死亡率风险的患者及其家庭。此类住院通常具有显著的预后不确定性、高水平的父母情绪过载，以及多个可能改变生活的决策点。除了临床敏锐度外，家庭还希望获得清晰一致的沟通、支持性决策、多学科的社会心理支持方法，以及在死亡后提供全面的丧亲支持。与成人不同，儿科医生需要照顾更广泛的一组罕见诊断，且预后信息有限。决策需要自己的伦理框架，替代判断让位于最佳利益标准以及“好父母”的叙述。当孩子死亡时，通常需要为更广泛的社区提供丧亲支持。在儿科神经危重症护理单元中，专科姑息治疗咨询将始终发挥作用，但通过提高这些主要姑息治疗技能，可以更好地为每位患者及其家庭提供服务。
