The Process and Impact of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in AYAs and Parents of Children with Serious Illness (TH114C)

The Process and Impact of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in AYAs and Parents of Children with Serious Illness (TH114C)

Decourcey DD; Schwartz A; Bernacki R; Lach S; Wolfe J

Journal of Pain and Symptom Management

2023

Advance Care Planning

Outcomes: 1. Describe the evidence-based benefits of serious illness conversations 2. Describe outcomes from a structured, multicomponent advance care planning communication intervention, the Pediatric Serious Illness Communication Program Background Early pediatric advance care planning (ACP), which aims to ensure care is aligned with patient and family goals and values, is associated with better end-of-life outcomes. However, ACP for seriously ill children, adolescents, and young adults (AYAs) remains uncommon and many pediatric clinicians report a lack of comfort with serious illness communication. Objectives We aimed to pilot the feasibility and acceptability of a multicomponent, structured ACP communication intervention, the Pediatric Serious Illness Communication Program (PediSICP), to teach serious illness communication skills to non-palliative care clinicians and facilitate longitudinal ACP. Methods Single-arm feasibility pilot of the PediSICP in AYAs with serious illness (13+), parents of children with serious illness, and clinicians. The PediSICP consists of an ACP communication occasion supported by a three-part conversation tool preceded by focused clinician training. The a priori feasibility threshold was >70% provider completion of the PediSICP intervention. Results We conducted 10 virtual trainings with interdisciplinary clinicians (N=40); 62% reported no prior ACP training. After training, 97% of participants were highly satisfied with training. Trained clinicians (n=30; 75%) conducted and documented 42 ACP conversations with 36 parents and six AYAs using the PediSICP framework; median conversation duration was 26 minutes [IQR 10–45]. All clinicians agreed that they felt prepared for the conversation and would recommend the PediSICP to colleagues. Thirty-three parents and five AYAs completed the intervention and reported participation was worthwhile (85%), they felt listened to (95%), and would recommend the PediSICP to other families (90%). Conclusions The PediSICP ACP intervention is feasible, acceptable, and highly valued by AYAs and parents of seriously ill children. Novel integration of web conferencing makes this program easily scalable for wider dissemination. Further evaluation will occur through post-intervention surveys and interviews to explore patient and family report of shared decision making, therapeutic alliance, communication quality, and psychological distress.

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April List 2023