Consent and ethics: children and young people

Published: 13/08/2019

End of life care

Withholding and withdrawing life-sustaining treatment in children

This is a naturally difficult area where anaesthetists may be either directly or indirectly involved. Detailed guidance comes from the Royal College of Paediatrics and Child Health and sets out the ethical and legal framework for making decisions to limit life-sustaining treatment in children. In particular it examines when withholding or withdrawing life-sustaining treatment might be ethically permissible; sets out a process for decision making; and explores the practical aspects of enacting such a decision, including the provision of end-of-life care and bereavement support.

Larcher V et al. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Archives of Disease in Childhood 2015;100:s1-s23
A detailed guide to withholding and withdrawing life-sustaining treatment in children.

In some parts of the UK excellent resources have been developed to assist professionals in providing detailed End of Life Care Plans for children and young people:

A shorter summary of the principles involved in making a decision to limit life-sustaining treatment in children as well as discussion of withholding versus withdrawing treatment, assessment of best interests, and dealing with conflict can be found in the following article, based in part on a previous edition of the RCPCH guidelines:

Wellesley H, Jenkins I. Withholding and withdrawing life-sustaining treatment in children. Pediatric Anesthesia 2009;19:972–978

The General Medical Council (GMC) guidelines on end-of-life care also have a short section on children and neonates:

GMC – Treatment and care towards the end of life: good practice in decision-making 2010

Please also see our Do Not Attempt CPR section.

We have suggested some additional educational resources on consent and ethical issues in our Resources section.

ReSPECT – Recommended Summary Plan for Emergency Care and Treatment

ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices. It provides health and care professionals responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment. ReSPECT can be complementary to a wider process of advance/anticipatory care planning and can be offered to children and young people who want to be actively involved in planning their end of life care.