58: Delivering Palliative Care in a Neonatal Intensive Care Unit

The World Health Organization defines paediatric palliative care as holistic care for mind, body and spirit of the child with life threatening/life limiting conditions and his/her family. Neonatal palliative care is increasingly recognized as an important aspect of the care of critically ill neonates, especially with increasing survival of extremely premature infants with complex medical issues. However, neonatal palliative care is not being implemented in a comprehensive manner in many neonatal units across North America. The aim of the study is to explore the concept of ‘neonatal palliative care’ as understood by parents and health care professionals in the neonatal intensive care unit (NICU) setting in Edmonton, Alberta. The secondary aim is to identify the factors that either enable or impede delivery of palliative care to these infants and their families. Four focus groups composed of NICU nurses/nurse practitioners, neonatologists and parents whose critically ill infants had received care in the NICU were conducted. Data from the focus groups were analysed using qualitative content analysis. Anticipated death of a critically ill infant is a tragic, traumatic and paradoxical event, primarily for the families, but also for the health care professionals involved in providing treatment and care. The parents, while acknowledging the high quality of care delivered, expressed a need for consistent care and support as well as respect for the role of parents in the decision-making process. The nurses emphasized the need for better communication, support to families and nurses and early identification of the need for palliative care. The physicians acknowledged the lack of specific training they had in effective delivery of palliative care, and ambiguity as to how this should be delivered. Most saw this as part of their own role. Lack of suitable private space for palliative care, absence of a written policy and limited resources were expressed as obstacles, while the quality of care and a family-focused approach were acknowledged as facilitators in the process of delivering palliative care. The need for an on-going education in palliative care and creating a multi-disciplinary team support was emphasized by health care professionals. Delivering Neonatal palliative care is a complex multidisciplinary process that is resource intensive requiring specialised skill sets. Various factors that would enable or impede effective palliative care delivery were identified. The need for developing a broader, integrated and flexible model of palliative care that includes prenatal and post bereavement care was underlined.