• Irene O Brien, Anita Duffy, and Ellen O Shea.
• Our Lady's Hospital for Sick Children, Crumlin, Dublin.
• Br J Nurs. 2010 Mar 25;19(6):352-6.

AbstractCaring for infants at end of life is challenging and distressing for parents and healthcare professionals, especially in relation to making decisions regarding withholding or withdrawal of treatment. The concept of medical futility must be considered under these circumstances. Parents and healthcare professionals should be involved together in making these difficult decisions. However, for some parents, emotions and guilt often are unbearable and, understandably, parents can be reluctant to make a decision. Despite the recognition of parental autonomy, if parents disagree with a decision made by medical staff, the case will be referred to and solved by the courts. The courts' decisions are often based on the best interest of the child. In this article, the authors discuss the concepts of 'parental autonomy' and 'the child's best interests' when determining medical futility for infants or neonates. The role of the nurse when caring for the dying child and their family is multifaceted. While nurses do not have a legitimate role in decision making at the end of life, it is often nurses who, through their advocacy role, inform doctors about parents' wishes and it is often nurses who support parents during this difficult time. Furthermore, nurses caring for dying children should be familiar to the family, experienced in end-of-life care and comfortable talking to parents about death and dying and treatment choices. Children's nurses therefore require advanced communication skills and an essential understanding of the ethical and legal knowledge relating to medical futility in end-of-life children's nursing.

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