Discuss possible scenarios, hopes and  fears

When: Where there is a risk of sudden, acute deterioration (see Appendix 3).

Who: Doctors should describe potential clinical scenarios to the family. Doctors, nursing or allied health staff can help explore the child’s and family’s values, priorities, hopes and fears.

This discussion uses your understanding of the values and goals of the child and the family to explore their hopes and fears as they apply in possible future scenarios.

The purpose of this step is to start the family and the child, where appropriate, thinking about future decisions. (Appendix 1 contains a tool for recording this conversation.)

Describe the possible scenarios. Based on those scenarios, explore values, hopes and fears.

Example phrases:

‘If time were shorter than we all hope …’ or ‘if it looked like (child) was approaching the end of their life …’

• What would be most important to you and (child)?
• Have you had any thoughts about where you would like to be — home, hospital, hospice?
• Is there anything you particularly wish to avoid?
• Is there anything you would want to do?

Depending on how the conversation progresses, you may or may not feel it appropriate to progress straight to step 3.