Advance care planning for children and young people: Information for young people and caregivers

What is advance care planning?

  • Advance care planning is a process where professionals, caregivers and young people work together to discuss, agree, and document priorities for care where there is a possibility that young people may die or experience life-threatening complications
  • Caregivers use the advance care planning process to share their values and wishes to provide the ‘best care’ for their child
  • Some young people will have an Advance Care Plan for many years before they reach the end of their life
  • An Advance Care Plan is always a work in progress. Each time a plan is agreed, it must be accessible to all services that might care for the young person and their family both for routine care and in a crisis. For an example of a document to help organise the care planning process please see the downloads section on the top right of this page
  • All service providers should use it to guide the care they provide
  • The existence of an Advance Care Plan does NOT mean a limitation of treatment
  • Advance Care Plans are communication tools not legal documents
  • The young person and their caregivers can change their minds and revise their Advance Care Plan at any time

The Child and Young Person's Advance Care Plan collaborative has more comprehensive information for caregivers, parents, children and young people

Recommended Resources

Children and Young Person's Advance Care Plan Collaborative

Published 1st January 2025

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Together for Short Lives
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Together for Short Lives have a helpline and family support hub to provide help and advice for those caring for a child with a serious illness.

Young Minds
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Young Minds is a national charity which supports both young people, their parents and loved ones through loss.

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