Guidance for withdrawal and withholding of intensive care as part of neonatal end-of-life care.

INTRODUCTION

Advances in foetal medicine and neonatology have enabled increased antenatal diagnosis of life-limiting conditions and improved preterm survival, escalating the debate surrounding the ethics of neonatal end-of-life care and withholding or withdrawing intensive care.

SOURCES OF DATA

Literature search of MEDLINE and the Cochrane library databases using the search terms [neonatal palliative care] AND [neonatal AND withdrawal of intensive care and treatment]. Review of consensus statements and guidelines.

AREAS OF AGREEMENT

UK practice is aided by Grade 3-4 evidence, consensus statements and practice frameworks. There is limited systematic evidence.

AREAS OF CONTROVERSY

We illustrate UK practice with clinical cases and describe worldwide variations.

GROWING POINTS

Neonatal end-of-life care incorporating withholding and withdrawing intensive care is not uncommon. The child's 'best interests' take precedent and clinical guidance has been published to support the joint decision-making partnership of clinicians and families. Withholding and withdrawing intensive care should be part of an overall end-of-life care plan incorporating the principles and standards of palliative care.

AREAS TIMELY FOR DEVELOPING RESEARCH

Further guidance on standards and staff training with regard to communicating and delivering neonatal end-of-life care is required to ensure consistent practice of staff and choices for families. The recommended establishment of neonatal outcome databases should aid UK preterm decision-making (NHS and Department of Health Neonatal Taskforce, Toolkit for high-quality neonatal services, London, Department of Health 2009).