End of life care for infants, children and young people with life-limiting conditions: planning and management

Practical help

You will need practical help and support at different stages of caring for your child. Your care team should help with things like:

Bereavement support

A member of your care team who has training in bereavement support should be supporting you when the end of your child's life is approaching. They should make sure you, your family, and other people who are important to your child know what support to expect. You should also be given some written information about the bereavement support that is available.

Your care team can help you think about the kinds of support you might need and who can provide it. With their help you should make a bereavement support plan for you and your family. Options to think about include visits with some of the healthcare professionals closely involved in your child's care. This could enable you to discuss shared memories and events with someone who knows your child well.

Helping you plan ahead

You should be encouraged to plan what you want to happen at the time of your child's death. Your child may also have views that they would like to express about this. The team can help prepare you for the difficult decisions that will be needed by explaining the options. They will ask you to think about your wishes for the care of your child after death, and about funeral arrangements.

You should also be encouraged to think of how you would like create positive memories of your child. For example, you might think about taking photographs or hand prints, taking a lock of hair, making a social media memorial page, or by carrying out rituals that are personal to your beliefs.

Questions you or your child could ask