Appendix 3 - Suggested triggers to progress to steps 2 and 3

  • Ask yourself, ‘Would I be surprised if this child died within a year?’ If the answer is ‘no’ [I would not be surprised], consider progressing to steps 2 and 3.

    Child or parents wish to progress advance care planning discussions. Life-limiting condition and any of the below:

    • family or staff recognise deteriorating patient condition
    • conflict between parents and clinical team regarding use of life-sustaining medical therapy
    • three or more unplanned hospital admissions in the past 12 months
    • prolonged unplanned hospital admission > 3 weeks
    • intensive care unit stay ≥ 1 week
    • multi-organ failure
    • severe infectious disease
    • initiation of palliative therapy
    • palliative therapy and new/progressing symptoms
    • participation in phase 1 trial
    • increasing difficulty controlling symptoms
    • prolonged or failed attempts to wean off invasive ventilation
    • escalating non-invasive ventilation requirements
    • under consideration for transplant (solid organ or bone marrow).