**5. Advance care planning**

Children and their families should be provided with support in developing an Advance Care Plan (ACP) which is reflective of their wishes concerning management of their illness and end of life care. An ACP will allow families and care providers to plan for the management of both reversible deteriorations in health and irreversible changes at the end of life. This individualised approach to care has the potential to improve patient quality of life and satisfaction [43].

The ACP should be documented in the patient's medical record where it can be shared amongst all caregivers. The family and medical team may wish to update the ACP to reflect redirection of care and reprioritisation of treatment goals as the child's illness progresses.

Ideally the ACP will be in place before the child is referred to PICU, but this is not always feasible, particularly in the case of an acute deterioration. PICU medical staff should be aware of any ACP that is in place and, if there is none, provide honest and clear communication to families regarding the perceived benefits, risks and invasiveness of critical care interventions [23]. This discussion can be particularly distressing for the family and all members of the multidisciplinary team will be invaluable in providing them with support in their decision-making.

In certain circumstances, a child may have an antenatal diagnosis of a lifelimiting condition and ACPs are devised with the parents in antenatal period.
