title: The 'ouR-HOPE' approach for ethics and communication about neonatal neurological injury.
abstract: 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.
authors.affiliation: Institut de recherches cliniques de Montréal, Montréal, Canada.|Université de Montréal, Montréal, Canada.|McGill University, Montréal, Canada.
authors.forename: Eric
authors.initials: E
authors.lastname: Racine
authors.affiliation: Institut de recherches cliniques de Montréal, Montréal, Canada.
authors.forename: Emily
authors.initials: E
authors.lastname: Bell
authors.affiliation: The DeVeber Institute for Bioethics and Social Research, Toronto, Canada.|Patients for Patient Safety Canada, Edmonton, Canada.
authors.forename: Barbara
authors.initials: B
authors.lastname: Farlow
authors.affiliation: Hospital for Sick Children, Toronto, Canada.|University of Toronto, Toronto, Canada.
authors.forename: Steven
authors.initials: S
authors.lastname: Miller
authors.affiliation: Université de Montréal, Montréal, Canada.|CHU Sainte-Justine, Montréal, Canada.
authors.forename: Antoine
authors.initials: A
authors.lastname: Payot
authors.affiliation: McGill University, Montréal, Canada.
authors.forename: Lisa Anne
authors.initials: LA
authors.lastname: Rasmussen
authors.affiliation: McGill University, Montréal, Canada.|Montreal Children's Hospital, Montréal, Canada.
authors.forename: Michael I
authors.initials: MI
authors.lastname: Shevell
authors.affiliation: NeuroDevNet/Kids Brain Health Network, Vancouver, Canada.
authors.forename: Donna
authors.initials: D
authors.lastname: Thomson
authors.affiliation: McGill University, Montréal, Canada.|Montreal Children's Hospital, Montréal, Canada.
authors.forename: Pia
authors.initials: P
authors.lastname: Wintermark
mesh_terms: D001930:Brain Injuries / Q000175:diagnosis / Q000523:psychology / Q000628:therapy; D003142:Communication; D003657:Decision Making; D026690:Ethics, Clinical; D006801:Humans; D007231:Infant, Newborn; D011368:Professional-Family Relations / Q000941:ethics*; D011379:Prognosis