• Explore the experience and values of the child and family

Things you can say:

Open questions

‘When you think about (child’s) future, what is most important to you?’ ‘What does (child) enjoy at the moment? What do they find hard?’ ‘What are you looking forward to most of all?’

‘When you think about your child’s illness, what are your hopes?’ ‘What are your worries?’

‘What keeps you awake at night?’ ‘What are you most afraid of?’

‘Is there anything or any outcome you would hope to avoid? A nightmare scenario?’ ‘What is the best case scenario for you and (child)?’

‘Is there anything that you feel it is important that you achieve together?’ (Gauvin and Cyr 2015)

Directive  statements

‘You mentioned that what is most important to you is that your child be cured of their disease. I am really hoping for that too. I would also like to know more about your hopes and goals for (child’s) care if the time comes when a cure is not possible.’

‘I hope that we can control (child’s) disease for as long as possible. At the same time 
I am hoping that they feel as good as possible each day, and I would like to talk about how we can achieve that.’

(Mack and Wolfe 2006)

Make reference to previous advance care plans and clarify the family’s preferences. Remember that these plans are dynamic, and that the family’s sentiments may have changed over time. Do not simply assume that the family’s position has not changed since previous discussions.

Things you can say:

‘When (child) was last ill, I remember you wanted to hold off on decisions about breathing tubes and other sorts of intensive care support. What is your thinking about those decisions and discussions at the moment? Has anything changed for you?’

‘When we last spoke, you were having doubts about whether or not BiPAP would be right for (child) if they became sick again. Have you had any further thoughts about that?’