Discuss, decide upon and document goals of  care

When: If there is current or potential for acute deterioration, or if the child is actively dying (see Appendix 3).

Who: Senior medical staff with the child, where appropriate, and family.

This discussion builds on the understanding of the values and goals of the child and the family discovered in steps 1 and 2.

The purpose is to document agreed goals of care and decisions made about specific interventions. (A tool for recording this conversation can be found in Appendix 1.)

Define the overall goal of care with the family. 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 (complete step 4).

Considering the family’s values and goals, decide with key members of the treating team what recommendations will be provided to the family about specific interventions.

The goals of care is not a statutory legal document and it does not need to be signed by parents. It is a communication tool that captures any decisions that have been made regarding medical treatments that should or should not be provided.

It is important not to treat this process as a form-filling exercise with parents.

Rather, explain that decisions will be documented based on this discussion so that other staff can find critical information quickly in the event of an acute deterioration.

Some parents may wish to see and keep a copy of the goals of care document. Others will not.

The goals of care document may need to be updated over time as the clinical situation changes and the child’s and family’s goals and views change in response.