Bracken-Roche Dearbhail, Shevell Michael, Racine Eric
Neuroethics Research Unit, Institut de recherches cliniques de Montréal, Montréal, QC, Canada.
Department of Pediatrics and Department of Neurology and Neurosurgery, McGill University, Montréal, QC, Canada.
Handb Clin Neurol. 2019;162:511-528. doi: 10.1016/B978-0-444-64029-1.00024-2.
Predicting neurologic outcomes for neonates with acute brain injury is essential for guiding the development of treatment goals and appropriate care plans in collaboration with parents and families. Prognostication helps parents imagine their child's possible future and helps them make ongoing treatment decisions in an informed way. However, great uncertainty surrounds neurologic prognostication for neonates, as well as biases and implicit attitudes that can impact clinicians' prognoses, all of which pose significant challenges to evidence-based prognostication in this context. In order to facilitate greater attention to these challenges and guide their navigation, this chapter explores the practice principles captured in the ouR-HOPE approach. This approach proposes the principles of Reflection, Humility, Open-mindedness, Partnership, and Engagement and related self-assessment questions to encourage clinicians to reflect on their practices and to engage with others in responding to challenges. We explore the meaning of each principle through five clinical cases involving neonatal neurologic injury, decision making, and parent-clinician communication. The ouR-HOPE approach should bring more cohesion to the sometimes disparate concerns reported in the literature and encourage clinicians and teams to consider its principles along with other guidelines and practices they find to be particularly helpful in guiding communication with parents and families.
预测急性脑损伤新生儿的神经学预后对于与家长和家庭合作制定治疗目标及合适的护理计划至关重要。预后评估有助于家长设想孩子可能的未来,并帮助他们做出明智的持续治疗决策。然而,新生儿神经学预后存在很大的不确定性,以及可能影响临床医生预后判断的偏见和隐性态度,在这种情况下,所有这些都给基于证据的预后评估带来了重大挑战。为了促使人们更加关注这些挑战并指导应对这些挑战,本章探讨了“我们的希望”(ouR-HOPE)方法中包含的实践原则。该方法提出了反思、谦逊、开放思维、伙伴关系和参与的原则以及相关的自我评估问题,以鼓励临床医生反思自己的实践,并与他人共同应对挑战。我们通过五个涉及新生儿神经损伤、决策制定以及家长与临床医生沟通的临床案例来探讨每个原则的含义。“我们的希望”方法应使文献中有时分散的关注点更具凝聚力,并鼓励临床医生和团队在考虑该方法原则的同时,结合他们认为在指导与家长和家庭沟通方面特别有用的其他指南和实践。