Before the death

When their child is not expected to live, make every effort to arrange for parents to have the choice to be with their child both before, at the moment of death, and afterwards. 

Help parents to 'parent'

Please don't 'protect' parents from this opportunity. Help parents to 'parent'. They may be afraid to get involved and need your help with information to make important choices. They may not have thought about the value of including brothers and sisters, or know how to prepare siblings.

Treat parents equally

Treat parents equally in giving information and breaking news. While parents will grieve in their different ways, we should not assume that it is always just fathers who need information or just mothers who need support.  Try to avoid complicated terminology without 'talking down' to families. Explain what you mean if you use words that are unfamiliar in everyday conversation.

When a baby or child is not expected to live

When a baby or child is not expected to live, make sure the parents understand that nothing more can be done for their child and help them to participate in the decision to withdraw treatment. Offer families the use of a bereavement room to give them privacy in the hours leading up to the change from intensive to palliative care, with the use of a bed so they can lie down with their child. Parents appreciate knowing what the choices are and that a child could possibly be taken home to die. Explain carefully the arrangements for pain relief, feeding, hydration and facial oxygen, if appropriate.

If parents want to be at the bedside during the removal of life-saving equipment, enable them to see what you are doing with their child and let them help you, if they want to. Any involvement will reinforce the reality of what is happening and that their child is dying.

Prepare children

Even before death, it is helpful if children are prepared when someone is not expected to live, giving honest information appropriate to the child's age. Prepare them for what they will see before they see it. Explain the machines. tubes, needles and other equipment.

It is important not to overwhelm children with information, but to be guided by them and to answer their questions honestly.

Click here for further information on understanding bereaved children and young people

The Child bereavement Charity has also written some guidance for Involving children when a parent is on ITU and is not expected to live