An advance care plan developed in the paediatric setting is a means by which the child, their family and treating team can capture their thoughts, discussions and decisions and communicate these to all the health professionals who might be involved in deciding on and offering treatment.

An advance care plan may be documented in a letter or on a dedicated form. Many tertiary centres have forms for this purpose. In the Thinking ahead framework, the form is referred to as a ‘Goals of patient care summary’.

When parents are present

In the majority of circumstances parents will be available to assist with decision making, but they may be distressed and in need of guidance.

In this situation, the health professionals caring for the family (for example, emergency department staff, ambulance officers) can use the plan as a starting point for further discussions about the best way to care for the child.

For example:

‘I can see you have been doing some thinking with Dr A. about what might be the best way to care for John if he were to become very unwell like this. Can you please tell me a little bit more about what you have been discussing?’

When parents are absent

Rarely, a child may experience a sudden, acute deterioration at school, a respite facility or even hospital while their parents are absent. In a clinical setting, the advance care plan can be used in conjunction with clinical assessment to determine the best treatment for the child until the parents can be contacted.

In a non-clinical setting an ambulance is likely to be called and the ambulance officers and other members of the treating team can be guided by the wishes expressed in the advance care plan.