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Advance care plan and end of life

Advanced Care Plans are used for children and adults with life limiting conditions. They are a way for families to consider what they would like to happen to their children in the future especially when children are not able to express this themselves. They are not legally binding but allow medical professionals to know what is important to you and your child in the event of them becoming unwell.


These plans can take time to complete but they give you an opportunity to ask important questions to the professionals already involved in your child’s care. You can ask information about what interventions are available for your child in different situations, how successful these might be and what these might involve. They allow you to support your child in the way you would wish, both medically and culturally- they often prioritise comfort and symptom relief over life prolonging procedures where the outcome is likely to be poor. Advanced care plans are best completed when children are well.

Respect is a nationally recognised advanced care plan. These documents should accompany children where ever they go. Respect stands for Recommended Summary Plan for Emergency Care and Treatment.

Who can help?

How to refer

The East Anglian Children’s Hospice will continue offering end-of-life care and bereavement support, and respond to urgent requests for care and support.

Please speak to a community nurse or paediatrician if you would like to change your child’s end of life plan using the following central telephone 0300 029 5050.

Need more information?

  • If your child does not have an Advance Care Plan but you would like to discuss this please contact the team on 0300 029 50 50.
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