Neonatal palliative care in action: moving beyond the rhetoric and influencing policy

Abstract

The purpose of this paper is to move beyond the rhetoric of espousing the importance and timeliness of palliative care for the neonatal population, and to explore how what is known can influence health and social policy. A recent Commonwealth of Australia Senate enquiry into palliative care raised concerns about the current lack of specialist perinatal and neonatal palliative care in Australia. Inherent to the difficulties of moving a neonatal palliative care model forwards are the identified barriers to palliative care practice in the clinical setting, which have been well defined. To inform policy, it is imperative that health professionals in the neonatal discipline are knowledgeable about legislative priorities and the public concerns regarding palliative care for neonates. This paper argues that there are several priorities for moving this model of care forwards, which include legislation that supports access to care such as development and funding support of perinatal hospices, continuity of care, caregiver support, research and in particular education for the health care professionals caring for dying babies and their families. To achieve this, we need to set national research priorities that reflect a truly collaborative partnership. It is time to move beyond the rhetoric.