Talking with children and families about death is one of the most difficult yet most important things a paediatrician must do. It can arouse feelings of sadness, guilt and fear; including the fear that we might cause further pain to families who are already suffering. Like any difficult task, we often find ways to delay these conversations, or avoid them altogether. But there is a downside to avoiding this important conversation. It denies children and families the opportunity to voice an opinion about the care they really want to receive and where they want that care provided. This may mean they do not have the chance to say and do things that are important to them.

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). The objective 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. This process of thinking ahead is becoming increasingly important as technological advances see more children survive with chronic and complex medical conditions.  

This resource is intended to assist clinicians with the difficult task of advance care planning. It contains three key elements.

Thinking ahead policy: Planning care for children with life-limiting conditions

This is a companion document for the Victorian Government policy, Advance care planning: have the conversation; A strategy for Victorian health services 2014–2018.

It discusses the ethical and practical aspects of advance care planning in the paediatric setting and provides an approach to decision making.

Thinking ahead framework: Planning care for children with life-limiting conditions

This framework provides a progressive approach to advance care planning discussions, a series of suggested clinical triggers, illustrative case examples and documents for capturing discussions and decisions.

Thinking ahead discussion guide: Planning care for children with life-limiting conditions

This guide is intended to help paediatricians and other clinicians approach advance care planning by offering ways of framing the discussion and examples of phrases that can be used.