When a baby or child is not expected to live
When a baby or child is not expected to live, sensitive care is required to ensure that the parents understand that, medically, 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 if they so wish. 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.
Help parents to ‘parent’
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. Take responsibility for checking that the parents have understood what you have told them.