Goals of patient care: Plans for when child deteriorates
This is an opportunity to discuss caregivers and child鈥檚 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:
- 鈥淲hile 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鈥.
- 鈥淲ould it be helpful to talk about your concerns if things don鈥檛 go as we hope?鈥
- 鈥淲hile we hope that your child will continue to do well, I think it鈥檚 important to think about how we might look after your family if s/he becomes more unwell.鈥
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鈥檚/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