Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care – structured evaluation, psychosocial/spiritual, and communication support before surgery – or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76±8.46 versus 7.0±5.0 and 46.34±12.59 versus 29.8±6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (−7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.

Introduction: Very little is known regarding the emergency department’s (ED) role in the care of paediatric patients with complex chronic and life-limiting illnesses. In fact, the provision of paediatric palliative care (PPC) in the paediatric ED has, of yet, never been explored. This study aims to explore pediatric emergency medicine healthcare professionals’ perspectives regarding their role in PPC and to compare these to other health care professionals’ understandings of the ED’s role in PPC. Methods: Interdisciplinary semi-structured focus groups were held with healthcare providers from pediatric emergency medicine, pediatric palliative care, pediatric complex care and pediatric intensive care. Exploratory open-ended questions introduced naturally occurring discussions and interactions. Data was transcribed in full and analysed using NVivo© software. Data analysis was performed by thematic analysis and theoretical sampling. Results: From January to October 2016, 58 participants were interviewed; most were female nurses and physicians. ED providers seek to maintain continuity of care and uphold pre-established wishes throughout PPC patients’ ED visits by listening and supporting the patient and family, evaluating the clinical situation, communicating with primary care teams and organising rapid admissions to wards. Some ED providers recognized having no choice to provide palliative care approach under certain circumstances despite thinking it might not be part of their culture and role. Each interdisciplinary team demonstrated particular values and cultures, influencing their understandings of the ED’s role in PPC; continuity of care is complicated by these distinct philosophies. Limitations to providing PPC in the ED are related to unsuitable physical environments, lack of uninterrupted time, efficiency expectations, unknown patients, provider lack of knowledge and moral distress. Solutions were directed at improving communication between teams and humanizing care to develop a sensibility to quality PPC in the ED. Conclusion: Although the perspective of pediatric ED’s role in caring for PPC patients is heterogeneous, several barriers to providing high quality emergency PPC can be overcome. Future studies will explore the experiences of PPC families presenting to the ED.