Appropriate levels of advance care planning

  • The level of advance care planning required will depend on the extent to which a child’s illness has progressed and are outlined in Table 1 below.

    Some children/parents may wish to complete all steps, even at an early stage in their illness (see case example 2). Others may not wish to complete any steps.

    Table 1: Advance care planning stages and illness trajectory. 
      Stage of life-limiting illness Minimum level to be offered Goals of care discussion (step 3) offered
    Early stage of illness/diagnosis of life-limiting condition Step 1 Optional
    Stable phase Step 1 Optional
    Slow deterioration, some risk of sudden deterioration Steps 1+2 Recommended
    Significant risk of sudden, acute deterioration Steps 1+2+3 Essential
    Acutely unwell Steps 1+2+3 Essential
    Dying Steps1+2+3+4 Essential