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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 …
Collaborators The Guidance Development Group consisted of the following members: Alex Mancini, Neonatal Matron; Christina Beardsley, Head of Multi-Faith Chaplaincy; Daniel Wood, Clinical Psychologist; Sabita Uthaya, Consultant Neonatologist; Neena Modi, Professor of Neonatal Medicine; Ria Lane, Project Manager; Rita Ranmal, Clinical Standards Co-ordinator, RCPCH.
Contributors SU led the systematic review, wrote the first and final draft of the paper and was a member of the Guidance Development Group. AM contributed to summarising the evidence and formulating recommendations, was part of the Guidance Development Group and reviewed the first and final draft of the paper. DW and CB contributed to writing the paper and were part of the Guidance Development Group. RR contributed to the development of the Guidance by reviewing the systematic review methodology and contributing to the development of the Guidance. NM contributed to the writing of the paper, reviewed the first and final draft and was a member of the Guidance Development Group.
Funding The work was funded by the Department of Health, UK.
Competing interests None.
Provenance and peer review Commissioned; externally peer reviewed.