Palliative Care and Ethics (PACE)

The PACE group brings together neonatologists, palliative care providers, and ethicists to examine care provision during the most challenging parts of a NICU stay.

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
Focus Group Leaders

Jessica Fry

MD
Lurie Children’s, Chicago

Kevin Sullivan

MD
Nemours, Wilmington

Meeting Schedule

First Wednesday of each month at 12:00 p.m. PT / 1:00 p.m. MT / 2:00 p.m. CT / 3:00 p.m. ET & Third Wednesday of each month at 12:00 p.m. PT / 1:00 p.m. MT / 2:00 p.m. CT / 3:00 p.m. ET