Thinking about your child dying is painful and takes a lot of emotional energy. 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. It's about making realistic plans and setting goals of how you want your child cared for.
Many families find that making choices earlier can help them to:
- feel more control over the future
- have time to think carefully about big decisions and look at all the options
- not have to worry about making important decisions in a time of crisis
- focus on supporting each other and grieving when they need to
- get support for feelings of grief or loss that they may feel before the loss happens (anticipatory grief)
How does planning ahead help my child?
Planning for end-of-life care early can, in some cases, allow your child to help make decisions if they wish. Your child may feel strongly about what to leave to friends or what to do for the funeral. These things are 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 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 helps anyone caring for your child know exactly how to respect your family's wishes. This plan can include any special wishes you and your child have, such as:
- taking your child home
- washing and dressing your child
- having religious rituals done
