Supporting adults before their child dies - guidance for medical professionals

This information is mostly aimed at medical professionals, although it may also be helpful for other professionals involved in a family’s care at this time.

Sensitive care is needed so that parents or carers understand that, medically, nothing more can be done for their child and to support them to be involved in the decision to withdraw treatment.

Giving information

Give any information sensitively and clearly. Try to avoid complex medical terminology, but also avoid ‘talking down’ to families. Explain what you mean if you use words that are unfamiliar in everyday conversation.

Check that the family have understood what you have told them, and give them the chance to write down the information.

Information and support may include the following:

In the hours leading up to the change from intensive to palliative care, offer families the use of a bereavement room to give them privacy, with the use of a bed so they can lie down with their child if they so wish.
Explain to families what the options are, including whether their child could be taken home.
Explain the arrangements for pain relief, feeding, hydration and facial oxygen, if appropriate.
Offer parents the option to be at the bedside during the removal of life-support 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 to continue parenting and supporting their child. They may be afraid to get involved with medical decisions, and may need your help with information to make important choices. Encourage them to include any siblings in their care, and direct them to information and support around talking to their other children.

Treat parents equally

Treat parents equally in giving information and breaking news sensitively. While parents will react and grieve in their different ways, do not assume that men and women will have specific needs. A common assumption to avoid is that men tend to need information while women tend to need emotional support.

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