Communication is vital to ensure a family’s wishes for their child’s care are carried out.

If the discussion has led to a consensus about goals of care or limits of treatment, ensure that the appropriate form is filled out, placed into the child’s records, and an advance care planning alert is created as a matter of urgency.

Even if specific decisions have not been made, it is important to document the discussion so far including the family’s feelings, concerns and wishes.

It can be useful to use the family’s own words to convey the tone of the meeting and highlight more subtle concerns such as approaches that are unlikely to be helpful in future meetings.

Documentation can be in a letter or on a dedicated form if available. It is not necessary to complete forms with the family as some will find this confronting. It is enough to tell them you will be documenting what has been discussed.

Things you can say:

‘It is important that if (child) deteriorates suddenly, the people who will be caring for them at that time know what we have been thinking and talking about. We have a special form here at the hospital for recording our decisions so that doctors, nurses and ambulance officers can quickly gather important information in a way that helps them provide the best care. The team looking after (child) will always talk to you further at the time.’

All teams involved in the child’s care should be informed of the discussion.

Ensure the emergency department and the ambulance service have alerts regarding the child on their computer systems.

Remember to inform the child’s school and respite facility if applicable. The team should negotiate who will do these various tasks.

It is often helpful for the family to have a copy of any written material, but this is not essential.

If a parent does not wish to carry or distribute their child’s advance care plan themselves, you should seek permission from them to share the advance care plan with other services and facilities.