Introduction

Vison: All infants who have potentially life-limiting conditions will have access to supportive, equitable, personalized, evidence-based palliative and/or end-of-life care.

Mission & Goals

Mission

• Develop research initiatives to investigate the epidemiology of neonatal mortality among Level IV NICU patients.
• Advance knowledge regarding current practices in neonatal end-of-life care, including symptom management and shared decision-making between clinicians and families, with a focus on improvement.
• Foster collaborative research between individuals from CHNC institutions to supplement information available in the CHND through such means as QI work, chart reviews, educational measures, and qualitative studies.
• Provide a space for reflection on and academic consideration of ethical issues that arise during innovative care for fetal and NICU patients.

Goals

• Establish an open forum for exchange of ideas and experiences regarding neonatal mortality, perinatal palliative care, and neonatal bioethics.  
• Contribute to the scientific evidence base regarding the NICU course and outcomes of infants with rare congenital diagnoses.
• Develop and provide educational materials to CHNC centers to support training in core skills related to perinatal/neonatal palliative care.
• Focus group efforts on best practices to improve equity in care, rather than just upon identifying disparities.

Accomplishments

• CHNC Annual Symposium 2021 Workshop: Life-Limiting Diagnosis in the Level IV NICU: Communication with Families facing Complex Decision-Making
• Pediatric Academic Society 2022 Annual Meeting Workshop: Life-Limiting Diagnosis in the Level IV NICU: Communication with Families facing Complex Decision-Making
• Collaboration with the Fetal Therapy Focus Group for an educational slide deck focused on antenatal counseling