The ‘ouR-HOPE’ approach for ethics and communication about neonatal neurological injury

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• 作者：Eric Racine ; Emily Bell ; Barbara Farlow ; Steven Miller ; Antoine Payot ; Lisa Anne Rasmussen ; Michael I Shevell ; Donna Thomson and Pia Wintermark
• 刊名：Developmental Medicine & Child Neurology
• 出版年：2017
• 出版时间：February 2017
• 年：2017
• 卷：59
• 期：2
• 页码：125-135
• 全文大小：251K
• ISSN：1469-8749

文摘

Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision-making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence-based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well-known disability paradox where patients self-report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the “ouR-HOPE” approach (Reflection, Humility, Open-mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self-assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.