RCH logo

Palliative care

Information Guide: Plans as child deteriorates

  • Goals of patient care: Plans for when child deteriorates

    This is an opportunity to discuss caregivers and child’s concerns or fears about the future. It is also a chance to discuss what interventions have been effective in the past in order to create a plan for future deterioration.

     

    Potential ways in to this conversation:
    • “While we cannot know exactly what will happen for your child, I wonder if it would be helpful to discuss what you might expect in the months ahead”.
    • “Would it be helpful to talk about your concerns if things don’t go as we hope?”
    • “While we hope that your child will continue to do well, I think it’s important to think about how we might look after your family if s/he becomes more unwell.” 

     

    Some potential discussion points:
    • Mobility issues and their solution
    • Community palliative care / home care and what that might look like
    • Should we call the ambulance?
    • Criteria for attending ED
    • How to answer the child’s/siblings questions; how to talk to children about dying
    • Medications in the home; routes of medication including subcut
    • Seizure plan
    • Symptom management plan
    • End-of-life care / symptoms; and their management