Advance care planning is ‘a process of discussions between families and health care providers about preferences for care, treatments and goals in the context of the patient’s current and anticipated future health’ (Spicer et al. 2015).

It is a process in which:

• the clinical team shares with the family knowledge about the child’s condition, prognosis and the potential efficacy and benefit versus the burden of various interventions
• the child and family shares with the clinical team their values, goals and hopes, and what they believe the child might experience as a benefit or a burden.

Discussions are had with parents or legal guardians and the child to the extent that the child’s developmental level, physical condition and willingness permits. The United Nations Convention on the Rights of the Child states that ‘a child who is capable of forming his or her view has the right to express those views freely on all matters affecting the child’ (United Nations 1989).

It is possible for even very young children to provide valuable insights into how they experience certain treatments. This can be very helpful in guiding the decision-making process, as parents and health professionals may not always be aware of how painful or frightening interventions can be for a particular child. It may be that something can be done to ease the burdens of treatment or it may be that the child’s views sway the decision away from providing particular interventions.

The objective of advance care planning is to determine the overall goal of medical care, and the interventions that should and should not be provided. This will guide current treatment, as well as future treatment in the event of a deterioration in the child’s condition.

In most cases these are discussions that evolve and progress over time. It is always important to document the key points that have been covered in the discussions and sometimes it is possible to document decisions that have been made. Various forms of documentation are available. In the Thinking ahead framework, the document in which decisions are recorded is referred to as a ‘Goals of patient care summary’.

The most important element of advance care planning is the process of reflection and information sharing. This will assist families and health professionals to make the best possible decisions if a crisis occurs.

There is a delicate balance to be found however. Families need to be given the opportunity to participate in decision making, but these are difficult conversations and it is important that efforts to undertake advance care planning do not become intrusive and traumatic.