Thinking about your child dying is painful and takes a lot of emotional strength. But after you find out your child has a life-limiting illness, it can help to make plans with your child’s doctors and nurses about the kind of care you and your child want for the end-of-life. Having these conversations early is not about losing hope or giving up on your child.

Why is it helpful to plan ahead?

Many families find that making choices earlier can help them to:

• focus on supporting each other and grieving when they need to
• not worry about making important decisions when times are hardest
• have time to think carefully about big decisions and look at all the options
• feel more control over the future
• get ready for the child’s last days and get counselling before the child dies (anticipatory grief counselling)

How does planning ahead help my child?

Planning for end-of-life care early also means your child can help make decisions, if he or she wishes. Your child may feel strongly about what to leave to friends or what to do for the funeral. These things are really hard to talk about, but they can mean a lot to your child.

Does it help if the plan is written down?

You and your child’s care team and/or the palliative and end-of-life care team can write a plan for what you would like to happen when your child is dying. Having a written plan means anyone caring for your child will know exactly how to respect your family’s wishes. Add any special wishes you and your child have, such as:

• taking your child home
• washing and dressing your child
• having religious rituals done​