(54 - Friday) Identification of Knowledge Gaps Regarding Pediatric Palliative Care Services and Utilization Among Medical Providers at a Tertiary Pediatric and Adult Congenital Cardiac Intensive Care Unit

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Abstract:

Background:
Congenital heart disease (CHD), which occurs in ~1 per 100 births, is the most common birth defect and a leading cause of infant death regardless of gestational age. Pediatric Palliative Care (PPC) has been associated with many benefits for CHD patients ranging from greater use of comfort care at end of life (EOL) to more documented advanced directives. This study aimed to identify knowledge gaps among medical providers in the use of PPC services in the cardiac intensive care unit (CICU) and to evaluate providers’ comfort with providing EOL care.

Methods:
This study was performed in a 64-bed pediatric and adult congenital CICU in a tertiary children’s hospital. We adapted previously validated surveys for administration to medical providers via email. Study participants included CICU nurses and advanced practice providers (APP), as well as faculty and training physicians from Cardiology, Critical Care and Congenital Heart Surgery. Our survey queried participants on knowledge of PPC services; criteria for, timing and utility of PPC consultation; and symptom management at EOL. Responses were recorded anonymously on the REDCapTM platform.

Results:
Our survey was emailed to 594 CICU providers and generated 134 responses for a response rate of 23%. Most respondents identified as nurses (47.4%; n=63), followed by faculty physicians (32.3%; n= 43), training physicians (12%; n=16), and APPs (8.3%; n=11). Respondents reported caring for many patients who received PPC consults in the last year, with most selecting 10+ (33%, N=37) or 5-10 (26.8%, N=30) patients. Most respondents (58%; n=65) perceived that PPC consultation occurs too late. When prompted to identify barriers to PPC consultation, most respondents (67.9%; n=76) highlighted the concern for parental perception of “giving up” and one-third (33.9%; n=38) worried that PPC consultation obtained too early will undermine parents’ hope. Interestingly, the majority of respondents (77.2%; n=78) strongly disagreed with the view that PPC consultation is indicative of “giving up”. Additional benefits of PPC consultation perceived by respondents were (1) provision of holistic, continuous care, and (2) helping families to not feel abandoned. The majority (53.6%; n=60) of respondents reported not possessing formal PPC training, but most expressed comfort with providing care for patients and families at EOL.

Conclusions:
Most CICU medical providers perceive that PPC consultation occurs regularly but is often solicited too late. While the concern for parental perception of PPC consultation as ‘giving up’ was identified as a barrier to PPC consultation, most providers themselves do not share this view. Respondents identified holistic and continuous care for patients and families as benefits associated with PPC consultation. Despite a lack of formal PPC training, most respondents reported feeling comfortable with providing EOL care for patients and families. These preliminary data can inform future efforts for PPC education and early integration into care provided to adult and pediatric CHD patients in the CICU.