430 - Exploring Palliative Care Involvement in Pediatric Cardiac Intensive Care Units

Publication Number: 430.5018

Duncan Henry, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Issac C. Duggan, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Isiah B. Duggan, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Emily Morell Balkin, UCSF Benioff Children's Hospital San Francisco, San Francisco, CA, United States

Background: Congenital cardiac surgery has improved survival outcomes for children, but often involves extended stays in the cardiac intensive care unit (CICU) and associated increases in morbidities. Pediatric palliative care (PC) is a means of addressing both quality of life and promoting shared decision-making by families and care teams. Despite advocacy for integration of pediatric palliative care in the CICU, implementation and integration of this care is limited. We aimed to explore the facilitators and barriers to implementing and integrating palliative care in the CICU.

Objective: We explored successful integration of pediatric palliative care in the CICU at high volume cardiac centers in the United States to desribe the barriers and facilitators to providing this care.

Design/Methods: We employed a focused ethnographic approach utlizing interviews of PC providers practicing in CICUs. We identified high volume pediatric cardiac surgery centers, e-mailed cardiac intensivists, and invited them to participate in a virtual interview. Interviews were transcribed and we used an inductive coding approach with constant comparison to identify and verify themes and sub-themes.

Results: We interviewed 9 participants (CICU intensivists and consultative PC team members) at 9 centers. Preliminary analysis revealed 5 themes. (1) Most PC teams include an interprofessional group of physicians, advanced care practitioners, nurses, and chaplains practicing a mixed model of PC involving primary palliative care practiced by ICU providers with consultation by a specialized service. (2) Identifying a CICU-based champion diminishes stigma surrounding PC involvement and facilitates an advanced understanding of the patient’s cardiac disease and projected trajectory. (3) Early discussions, including prenatal approaches and trigger consults, help form therapeutic alliances between staff and families, reduce barriers to introduction at later points in life and foster inclusion of these approaches by the care team. (4) Effective PC programs frame decision-making as “suggestions” rather than “decisions” to limit decisional regret amongst families. (5) Common barriers to PC implementation include staffing limitations of the PC team and perceived negative connotations PC may have amongst providers and families at the end of life.

Conclusion(s): Initial results highlight actions and structures that promote palliative care integration into CICUs and identify processes, personnel, and approaches that can be adopted. Further research is needed to better understand which approach to palliative care integration in CICUs is optimal.