Shared decision making for infants born at the threshold of viability: a prognosis-based guideline.

Abstract

Making prenatal decisions regarding resuscitation of extremely premature infants, based on gestational age alone is inadequate. We developed a prognosis-based guideline. We followed a five step approach and used the AGREE II framework: (1) systematic review and critical appraisal of published guidelines; (2) identification of key medical factors for decision making; (3) systematic reviews; (4) creation of a multi-disciplinary working group and (5) external consultation and appraisal. No published guideline met high-quality appraisal criteria. Survival, neurodevelopmental disability, quality of life of child and parents, and maternal mortality and risk of long-term morbidity were identified as key for quality decision-making. Eighteen stakeholders (including parents) advocated for the incorporation of parents' values and preferences in the process. A novel framework, based on prognosis, was generated to guide when early intensive and palliative care may both be offered to expectant parents. Pre-implementation assessment is underway to identify barriers and facilitators to putting in practice.