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

Abstract

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).