This page provides information about advance care planning for families who have a child or young person with complex medical needs. It has been written jointly by healthcare professionals and other families, who all have experience of advance care planning and children’s palliative care. 

What is an Advance Care Plan?

Advance care planning is a way of thinking ahead together so that the child’s care reflects what matters most to them and their family, even in difficult or unexpected situations.

The plan is a document that helps to communicate what is most important to the family and their child, including their hopes, wishes and goals for current and future healthcare. It helps to keep the child at the centre of all decisions, so their care is not only guided by clinical knowledge but also by who they are and what matters most to their family.

In Wales, this document is called a Paediatric Advance Care (PAC) Plan. In England it may be called a Children and Young Persons Advance Care Plan (CYPACP or ReSPECT) and these plans are described in more detail on the website www.cypacp.uk. 

Why complete an Advance Care Plan?

Advance care planning does not mean that families are being asked to make decisions alone. Healthcare professionals will still use their clinical knowledge and experience to make recommendations, but discussing these in advance can help give the family time to think about options and what matters most to their child and family.

An Advance Care Plan isn’t a legal document, but it is a very helpful guide for everyone involved in a child’s care because:

• It gives families a chance to talk about hopes, values and goals for their child’s care
• Making decisions during a medical crisis can be difficult. An Advance Care Plan helps families to think through and make plans before a stressful situation arises
• Creating the plan when a child is well, with the support of the healthcare team who know them best, means families can make informed and thoughtful decisions together
• The plan is here to guide everyone caring for the child. It helps make sure the families wishes are understood and that the child gets consistent, supportive care

What information does it include? 

An Advance Care Plan may include: 

• What is important to the child - what helps them feel safe, comfortable and cared for
• A child’s medical background
• Information about the family, including any cultural, spiritual, or religious beliefs
• What the family would like to happen in case of expected symptoms or health complications
• What the family would like to happen if their child suddenly becomes seriously unwell or in a medical emergency. Their preferences for end-of-life care, including where they might want care to happen and what feels most important to them
• Thoughts and wishes about organ donation, if this is likely to be a possibility for the child

What does the process involve?

• Choosing the right time - families decide when it feels right to begin the process
• Deciding who to involve - families can complete an Advance Care Plan with healthcare professionals, other family members, and, if appropriate, the child
• Seeing an Advance Care Plan - families will be shown an example of the document, and can ask any questions that they may have
• Choosing a comfortable setting - conversations can usually take place wherever the family prefer
• Open and honest discussions - these conversations explore the families wishes for their child in different situations. It gives them the chance to ask questions about what different care options might mean for their child
• Support and guidance - their healthcare team are there to support them throughout, and to write a summary of the conversations that they have into the Advance Care Plan document

The plan does not need to be completed all at once. It can be done at a pace that feels comfortable for the family. Families often tell us that although advance care planning can initially feel daunting, it actually becomes something that brings reassurance and helps them feel more prepared.

One parent explained:

“It has given us peace of mind and reassurance, that in all situations that arise our wishes as a family and for our child are all written down, giving healthcare professionals access to our wishes. The process of making the plan was made easier by the support of the healthcare professionals involved, who were listening but also explaining.”

Reviewing the plan

The child’s Advance Care Plan can change as their needs change. It will be regularly reviewed, and can be updated whenever the child’s health or situation shifts, so that it always works best for them. Families can ask to change or stop using the plan at any time, if it no longer feels right for them and their child. 

Sharing the plan 

Families will have their own copy of the Advance Care Plan. It works best if they show this to any new professionals they meet during healthcare for their child. With the families permission, the plan will be sent to other professionals looking after the child. This includes professionals who may be contacted in an emergency, so the plan becomes an important part of their child’s medical record.  

A personal choice

An Advance Care Plan is for the family and their child. It can feel emotional, and it is okay for families to take their time, or to decide not to complete one at all. If they do choose to start the process, their healthcare team will support them every step of the way. Whether or not they choose to complete an Advance Care Plan, the team caring for the child remains committed to supporting the family and their child with honesty, compassion, and respect.

Written in conjunction with colleagues from the Betsi Cadwaladr University Health Board

Information leaflet

Getting in touch

If you would like to speak to a member of our team please contact us using the details below. 

Hope House
Email: [email protected]
Phone: 01691 671999

Tŷ Gobaith
Email: [email protected]
Phone: 01492 651900

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