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Neonates, Children and Young People

Decision-making at the end of life

At the end of life, indeed as with other decisions over their health, decision making in children depends on their capacity to consent. All surgeons should be familiar with the available published guidance on consent in children, for example 0–18 Years: Guidance for All Doctors, including the implications of Gillick competency.

If children are able to express a view, you should listen and respect this. At the end of life, children and young people should be encouraged to discuss decision making, including their wishes and preferences, which should be taken into account when deciding the child’s best interests, even if they lack capacity.

Treatment and care at the end of life

Similar to dealing with adult patients, the surgeon should use guidelines, where these exist, to guide treatment for patients who may be nearing the end of life and decisions on the available treatment options should be discussed with the multi-disciplinary team. The surgeon should ensure that children who may be nearing the end of life are under the direct care of a named medical paediatric consultant, who should lead and co-ordinate their care. Specialist paediatric palliative care teams should be able to advise on matters of palliation for neonates, children and young people, and advice should be sought where required.

Planning for future care at the end of life

Similar to adults, children, young people and their parents/supporters should be encouraged to take part in advance care planning to formalise their preferences and wishes for treatment at the end of life. Advance care plans should be shared with appropriate members of the multidisciplinary team and be easily available in the patient’s medical notes.

Communicating with children, young people and their families

When discussing care with children, young people and their parents you should ensure that the information given is provided in the most appropriate way and in a sensitive manner. Ensure that the healthcare professional discussing matters around end of life is the most appropriate person, depending on the subject matter, their expertise and ability, their availability and the views of the child, young person and their parents/carers. Bear in mind that the method of information giving may be different depending on the age and understanding of the child or young person and could involve one-to-one discussions, play, art and music, written materials, pictures and digital media.

You should support parents during the decision-making process and inform them of the part they play. It is also important to provide support to siblings who will undoubtedly be affected by the death of their brother or sister and the grieving of their parents.

This guidance is adapted from the GMC’s Treatment and Care Towards the End of Life: Good Practice in Decision Making, 0–18 Years: Guidance for All Doctors and the National Institute for Health and Care Excellence’s (NICE) standard End of Life Care for Infants, Children and Young People with Life-limiting Conditions: Planning and Management.

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