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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 your child’s care reflects what matters most to them and to you as a family, even in difficult or unexpected situations.

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

In Wales, this document is called a Paediatric Advance Care (PAC) Plan. If you are receiving healthcare in England, then 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 you 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 you time to think about options and what matters most to your child and family.

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

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

What information does it include? 

Your Advance Care Plan may include: 

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

What does the process involve?

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

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

Sharing the plan 

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

A personal choice

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