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Abstract
98% of neonatal deaths occur in a hospital setting, with few families spending the last few days of their babies' life at home or children's hospice. Palliative care is only routinely provided for babies over 28 days old, with neonates being cared for in neonatal units.
We conducted a national survey with an objective to explore the palliative care practices across the UK. A link to electronic survey was sent with the BAPM newsletter in October 2009, targeting tertiary neonatal units. 35 responses representing 29 units were obtained. 69% of units do not have a palliative care guideline or care plan. 30% of existing guidelines do not include guidance on feeding. Only two units have a neonatal palliative care team. Most units have access to a hospice, but only 63% refer babies. Less than one-third of units have appropriate literature for parents and siblings. Only one unit does not offer bereavement support. Less than a third have a trained counsellor or psychologist. Consultant Neonatologists are largely responsible for bereavement support, follow-up and staff debriefing.
Conclusion 69% of neonatal units offering palliative care are operating without a specific guideline and the practices are not uniform, the training is variable and mostly inadequate. There are few available National guidelines on Neonatal Palliative care and local guidelines vary. The recent publication of the BAPM on Neonatal Palliative care (supportive and end of life care) will provide units with a framework on which to base local guidelines.