The Evolving Landscape of Care for Children with Trisomy Diagnoses.

1. Identify how and why families caring for children with trisomy diagnoses are at risk for bias and differing standards of care across the nation 2. Describe resources, utilize evidence based clinical information, and effectively advocate for families caring for patients with trisomy diagnoses that is in alignment with their goals of care. Children with trisomy diagnoses experience variability in medical interventions offered at different institutions. Despite evidence that children can live longer with intervention, there remains a lack of consensus of how to deliver equitable care. With access to trusted standards of care, Palliative Care clinicians can provide strong, consistent support for families as they potentially confront bias and inequities in care. Historically, the medical system has been challenged by patients with rare conditions, inhibiting the ability to develop standards of care that acknowledge and account for these unique diagnoses. Children with trisomy are one such example that has persisted over time. The evolution of ethical viewpoints has influenced the approach to care drastically. Families encounter variability in interventions offered at individual institutions. Despite prognostic data that shows children can live longer with intervention, there remains a lack of consensus for how best to approach the care of these children. Families' goals are often nuanced and families see high quality of life potential for their children. However, families remain at risk of receiving differing standards of care depending on social determinants of health. Families with advocacy experience and financial means may seek care at an institution that will perform a desired intervention, while other families may be dependent upon the approach of the institution closest to them. Pediatric Palliative Care clinicians are adept at operating through the lens of prognostic uncertainty to honor the goals of families. However, their ability and scope change dramatically when the standards of care vary widely. Given this landscape, care delivery is ripe with the potential for bias, carrying a strong risk for inequity to remain a guiding force of decision making. This case-based presentation examines the current state of care for children with trisomy diagnoses, the role that bias plays, and the inequities that the lack of consistency across institutions presents for families. Families deserve to have access to clear, evidence-based information regarding interventions for their children with trisomy diagnoses to inform their decision making. Without access to transparent data and trusted standards of care, Palliative Care clinicians cannot adequately support families making decisions and caring for this fragile population. Ethical / Legal Aspects of Care; Diversity, Equity, Inclusion, Belonging, Justice [ABSTRACT FROM AUTHOR]