Integrating Bioethics and Neonatal Palliative Care in a Pandemic: The Scope of Advocacy and Online Collaboration for Exceptional Life-Sustaining Medical and Surgical Interventions in a Regional Neonatal Intensive Care Unit

ABSTRACT

Purpose of Study The regional NICU is an essential healthcare resource for families of newborns with serious life-threatening illnesses. Mechanical ventilation, cardiovascular therapies, therapeutic hypothermia, and neonatal surgeries are common life-sustaining interventions. Our NICU serves an underprivileged population in a resource poor environment and several ethical questions frequently emerge when facing extremes of innovative therapies. The pandemic and rapidly changing institutional protocols accentuated challenges faced by frontline NICU teams caring for newborns at risk for devastating illnesses and death. Concurrently, evolving paradigms in neonatal ethics required urgent and high quality palliative care in a background of racial and socioeconomic inequities, restrictive visitation policies, and limited healthcare resources. The purpose of this study was to ensure that neonates and their families receive ethically sound care, timely referrals for innovative therapies, and specialized palliative care in the strained and uncertain environment of the COVID-19 pandemic. Methods Used The key steps consisted of structured and impromptu discussion forums for specialized palliative care and medical ethics, perinatal case conferences and pediatrics grand rounds on virtual platforms, educational webinars for interdisciplinary teams, and improved electronic communication. Online collaboration and innovative combinations of in-person and virtual meetings were utilized for urgently Incorporating clinical updates. Summary of Results: 1. A neonate with severe HIE and postnatally diagnosed congenital diaphragmatic hernia required emergent ECMO center referral. NICU providers utilized a structured bioethics and palliative care framework for providing family support and discussing the prognostication challenges of acute illnesses. 2. Many important bioethical questions emerged while caring for infants with life-threatening chromosomal abnormalities. Ethical tension was addressed by teaching tools, quality of life and pediatrics ethics conversations, mitigation of moral distress, contemporary clinical and surgical experience, community engagement, and family perspectives. 3. Ethical conflicts are central in the decision to resuscitate neonates born between 22 and 23 weeks of gestation. To provide urgent prenatal consultations and attend high risk deliveries, we collaborated across geographically distant healthcare systems, unified management strategies and analyzed outcomes data. 4. NEC in several extremely preterm babies had devastating outcomes and the team respected each family's voice with compassionate, shared decision-making for both curative care surgeries and palliative care. Conclusion(s) The new workflows, telephone and video conferences, and redirection to telehealth based family meetings did not change important outcomes during the pandemic. Advocacy and education for integrating bioethics and palliative care were vital facets of neonatal critical care in a resource poor and ever-changing pandemic environment.