Principles of advance care planning for children and young people
- Advance care planning is a process where professionals, caregivers/parents and children work together to discuss, agree, and document priorities for care where there is a possibility that children may die or experience life-threatening complications
- Parents use the advance care planning process to share their values and wishes to provide the ‘best care’ for their child.
- Some children 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 this child and their family both for routine care and in a crisis
- 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 parents can change their minds and revise their Advance Care Plan
Who can initiate an Advance Care Plan?
Where possible, advance care planning should be initiated by someone who:
- Knows the family, has experience and confidence and has the time to lead on advance care planning conversations
- Is sensitive to the parents, child’s and family’s needs and has the ability to provide support
- Understands the complexity of initiating a conversation and that this should not act as a barrier to meaningful conversation
- Is able to harness and respond to uncertainty and supports families to cope with these uncertainties
- Is able to consider all possible treatment and care options and addresses them in terms of the benefit for the child
- Is able to include members of the family and key members of the multidisciplinary team
- Understands that the process may involve several different discussions over a period of time
- Understands that all concerned in the decision-making process are allowed enough time for information to be given and understood, to consider, ask questions and express their opinion
Key Documents
- For comprehensive guidance for clinicians: Best practice guidance to enhance the process of advance care planning for a child or young person
- For summary guidance to support clinicians: How to complete the CYPACP
- Please see downloads for a Children and Young People's Advance Care Plan document