First discussion - living with a life-limiting illness

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    Discuss values and goals

    When: After diagnosis of a life-limiting illness or during a stable phase (see Appendix 2).

    Who: Doctors, nursing or allied health staff with the child (where appropriate) and the family.

    Use the discussion tool to clarify your understanding of the values and goals of the child (where possible and appropriate) and the family.

    The purpose of this step is to build a solid foundation for future decision making and to assist the family in their own thinking about what is important to them. ( Appendix 1 contains a tool for recording this conversation.)

    The questions you may wish to ask are:

    • What do you (or does your child) enjoy?
    • What do you (or does your child) find most difficult about their illness and treatment?
    • As you think of the future:
      • What is most important?
      • What are your hopes?
      • What are your fears? What are the things that keep you awake at night?
      • What are your goals?