It is OK for a child to die without an advance care plan

• Some parents do not wish to make decisions ahead of time, but the opportunity should be offered if circumstances allow.

Parents DO NOT need to sign any documents

• These documents are communication tools rather than legal documents, and do not need to be signed by parents. While they currently don’t have the force of a legally executed instrument in Victoria, a doctor is less vulnerable from a legal perspective if they can document they have considered the values and preferences of the child and their family when making medical treatment decisions. If the Victorian Government’s Medical Treatment Planning and Decisions Bill 2016 is passed, it will take effect after March 2018 and will clarify this matter significantly by giving legal effect to advance care plans.
  
  

Normalise advance care planning as part of the care of children with life-limiting conditions

Take medical responsibility where appropriate

• It is important not to present unrealistic or inappropriate interventions as a choice for the family to make. If for example, cardiopulmonary resuscitation would be ineffective at this point in the illness, this should be gently explained to the family, not framed as a decision for them to make.

Explore the child/parents’ preferred role in decision making

• Parents and children vary in the extent to which they wish to contribute to decision making. At one end of the spectrum are those who wish to take most of the responsibility; at the other end are those parents who prefer the treating team to take the lead role. In most cases decision making is shared. It is helpful to explore what role individual parents would like to play, and in most cases it is important to explicitly state that parents should not feel alone in this process.

Advance care planning is a process, not an event

• Advance care planning is a dynamic and ongoing process, not an event. Parents and, where appropriate, children need time to observe, reflect, think and talk, and some need more time than others. Many need to see tangible signs of deterioration or treatment failure (for example, physical changes, imaging or test results). Preferences and opinions may change over time.

Always start a conversation by exploring the child’s and parents’ understanding of the child’s condition

Talk about the ‘big picture’ before discussing specific interventions

• Explore hopes, fears and goals. Who is this child? What do they enjoy? What do they find hard? How do they experience their illness and treatment? Where do they want to be as they deteriorate?

Explore what it means for that parent to be a ‘good parent’

• Much of the struggle for parents centres on their wish to be a ‘good parent’. They are often caught in a dilemma: should they leave no stone unturned in the search for a cure (or prolonging life) or should they focus on the child’s comfort?

Provide frequent reassurance that you want to provide the best care for the child and support for the family

Consider the rational and emotional elements

• Health professionals are trained to approach clinical decision making in a very rational way. Parents often approach it from a more emotional perspective. This is not to say that clinicians don’t experience emotions or that parents cannot be rational. Eliciting, understanding and responding to parents’ emotions is important to show compassion. Acknowledging emotions also helps parents because it’s difficult for them to do any cognitive processing when they are feeling emotionally overwhelmed.

Carefully consider and define the goals of care (these may change over time)

• The most crucial step is to establish and agree upon the overall goal of care at a given point in time. This usually falls into one of the following categories:
  • focus on sustaining life
  • primary goal is to sustain life, but with some limits
  • primary goal is comfort, but some interventions to sustain life are considered appropriate
  • exclusive focus on comfort