What next?

When treatment isn’t possible

At this point, many parents want to know how long their child is likely to live. Nobody can tell you exactly, but your child's consultant may be able to give you an approximate time. 

Parents can also ask for a second opinion or go back and talk in more detail with their child’s consultant.You may want to make a list of questions, as it may be difficult to remember everything. 

Even at the end stage of an illness, parents have choices about where their child stays, and what care they are given. Try to discuss the views and opinions of all family members.

Must children stay in hospital?

Most children are happiest at home, surrounded by their family and familiar surroundings. But if a child needs a certain level of medical care – or doesn’t feel comfortable – hospital may be a better place.

A local children’s hospice may be another option. Or it may be possible for the family to use the hospice for short breaks.

Experienced hands

The care team looking after the child will be experienced and will do all they can to ensure that the child is comfortable and free from pain by managing and controlling their symptoms.

Parents can discuss their fears and concerns, and can expect staff to listen to their views.

Talking to the child and siblings

What parents tell their children is entirely up to them. Care professionals are on hand to help them best approach this serious news, and there are books that can help explain death to children. 

Most parents find that simplicity and honesty work best. Children may overhear conversations and be very sensitive to the atmosphere. It is a difficult time for everyone, and some families find it best to express their thoughts and fears openly.

Other family members

Members of the team caring for your child are available to talk to grandparents and other close family members on behalf of parents. They will talk to parents first about the information to be discussed.

Talking to the school

Parents find it helps to keep their child’s school informed. CLIC Sargent Social Workers and Nurses can visit the school if the child and parents wish. Siblings can find it reassuring to have a trusted teacher or tutor who understands what they may be experiencing and can offer them support if needed in the months ahead.

Parents and work

Parents may need to consider if they will feel able work, and what to tell their employers. For instance, they could get a 'fit note' from the doctor, or negotiate reduced hours, flexible working or take advantage of special leave. For parents who are self-employed, specialist advice on how to manage the situation may be advisable. Parents on benefits may also need to seek specialist advice. Social workers can help people access this. 

Practical issues

When a child dies there are certain practical matters that have to be addressed. There is further information in our practical issues section.