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Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice
  1. Vic Larcher1,
  2. Finella Craig2,
  3. Kiran Bhogal3,
  4. Dominic Wilkinson4,
  5. Joe Brierley1,5,
  6. on behalf of the Royal College of Paediatrics and Child Health
  1. 1c/o Ethics and Law Advisory Committee RCPCH, London, UK
  2. 2Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  3. 3Partner, Weightmans LLP, London, UK
  4. 4Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK
  5. 5Paediatric and Neonatal Intensive Care Unit, Great Ormond Street Hospital, London, UK
  1. Correspondence to Dr Vic Larcher, c/o administrator (J Pettitt), Ethics and Law Advisory Committee RCPCH, 5-11 Theobalds Road, London WC1X 8SH; John.Pettitt{at}rcpch.ac.uk

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Foreword

It is now more than 18 years since the late Professor David Baum wrote the foreword to the first Withholding and Withdrawing Life Saving Treatment in Children document. Since then the practice of paediatrics has changed radically. We are now seeing increased survival rates for infants born between 22 and 25 weeks gestation, new gene therapies stretching the boundaries of possibility, and advances in paediatric surgical techniques unimaginable in the last millennium.

Against this backdrop, we are in an era of ubiquitous access to the internet and widespread use of social media. Children, young people, their parents and carers have very different knowledge and expectations of a condition and its treatment. Children and young people rightly expect to be fully involved in decisions about their treatment options wherever this is feasible and we must be able to communicate those options clearly and honestly.

In this extraordinary world of medical miracles, one thing has not changed; the complexity, challenge and pain of that most difficult of decisions: is the treatment we are providing no longer in the best interests of the child? There is no technology to help us here—only guidance, discussion, and adequate time and information for truly shared decision making. Our commitment to the child's best interests must start before birth and continue through to palliative and end of life care. Even after death, a duty to provide bereavement support for parents and siblings is the natural conclusion to the difficult decisions we have made with them in the preceding weeks and months.

This latest guidance on arguably the most difficult aspect of paediatric care has updated the decision making framework and incorporated more extensive advice on the direct involvement of children and young people. It also takes account of the broader possibilities flowing from developments in paediatric palliative care.

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