P027: Who should discuss goals of care during acute deteriorations in patients with life threatening illnesses? A survey of clinicians from diverse pediatric specialties

Introduction: Discomfort exists discussing goals of care with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. This study seeks to explore the perceptions of pediatric specialists involved in the care of children with life-threatening illnesses with regards to goals of care discussions and management during acute unexpected deteriorations. Methods: This single center survey study used 4 scenarios of children presenting to the emergency department with respiratory distress. Scenarios included patients with hypoplastic left heart syndrome, static encephalopathy, spinal muscular atrophy and refractory leukemia. Questions following each vignette were identical. Physicians from the specialties most involved in these scenarios completed the survey by email or in person. Data analysis used SPSS v.20 (IBM Inc.). Related samples non-parametric tests compared participants’ Likert scale answers. Results: Between May 2015 and May 2016, 60 participants completed the study; 14 were excluded (>60% missing answers). Most (80.4%) participants reported an interest in pediatric palliative care; 71.7% had 0-3 formal trainings. Participants believed goals of care were best discussed before an acute deterioration. Acute deteriorations were not seen as an opportune moment to initiate discussions about goals of care. However, validating these previous wishes was necessary, given that not discussing them was judged unacceptable by the participants. Pediatric specialists were seen as the most suitable teams to initiate these discussions, while the emergency department's role in these discussions was unclear. Several management options were less acceptable for the patient with static encephalopathy. Conclusion: Discussing goals of care during acute illness exacerbation involves many stakeholders, who may not always be available at critical times. Advanced care planning with these families is essential to prepare them for acute health events.