Other decision making considerations

Supporting your child during this difficult time

For many children maintaining a normal routine as much as possible is very helpful (school, outings with friends, sports), whilst for others spending time with their family is important.

It may be a good idea to take advantage of help if it is offered by family and friends. The palliative care team can provide advice and assistance to schools so that siblings are well supported in the school environment.

Siblings will all experience grief and loss in an individual and age-appropriate way. It may be helpful to explore different types of supports and services that are available to help them with their feelings of grief and loss.

Managing symptoms during end of life

The symptoms experienced by a child who is dying are often similar to those they already have but may be more intense. These could include pain, nausea, vomiting, breathing difficulties, excess mucus (secretions), constipation or diarrhoea.

Palliative care teams are skilled at managing these symptoms and ensuring your child is as comfortable as possible. They are also able to think and plan ahead for possible new symptoms that may occur during end of life so that your child’s care is well managed whether they are in hospital or at home.

Decisions about food and nutrition

Feeding or eating can be an emotional and sensitive issue for some families for many reasons. It is natural for a person who is close to dying to lose hunger, no longer tolerate food or not want any food or fluids.
We encourage you to talk to your palliative care team. Some questions to consider may include:

My child is finding it difficult to swallow- can I still feed them?
I’m upset that my child hardly eats any more, what can I do?
Every time I try to feed my child they feel nauseous/vomit/refuse to eat, what can I do?
If I don’t feed my child am I starving them?
Are dying children hungry if they don’t get fed?
Will my child suffer if I don’t feed them?
My family says I should be feeding them more but I can’t, what should I tell them?
Do I have to agree to a tube into the stomach (nasogastric tube)?
If my child can’t eat, will they need intravenous fluids?
Why have my child’s medical team decreased my child’s feeds?