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Background and aims
Professionals working in neonatology have a duty to act in the best interests of the infant. Normally, the goal of care is to sustain life and restore health. However, there are circumstances in which treatments that sustain life are not considered to be in the infant's best interests. The Royal College of Paediatrics and Child Health (RCPCH) guidance, Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice,1 focuses on the decision making process. The British Association of Perinatal Medicine guidance, Palliative Care (Supportive and End of Life Care) A Framework for Clinical Practice in Perinatal Medicine,2 sets out the principles of palliative care for infants. Following a systematic review of the literature we have developed evidence-based guidance for the practical aspects of caring for an infant receiving palliative and end of life care.3 We define palliative care as the ‘the active, total care of infants whose disease is not responsive to curative treatment; the goal of palliative care is achievement of the best possible quality of life for infants and their families’. Here we summarise the Guidance, a publication from Chelsea and Westminster NHS Foundation Trust developed in collaboration with the RCPCH.
We established a Guidance Development Group (GDG). The Guidance was developed in accordance with AGREE II criteria. A systematic search and literature review were carried out focusing on five areas of management:
Care of the infant and family
Recognising and addressing conflict surrounding end of life decisions
Supporting parents and families
The postmortem examination and organ donation
Supporting staff members.
The evidence gathered was synthesised and a series of recommendations were made, graded according to the level of evidence. Where the strength of the evidence was poor or absent, recommendations were based on informal consensus within the GDG. It is …
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