• Summarise the discussion so far
• Agree on next steps
• Acknowledge the family’s courage
• Check if there is anything else important they would like you to know
• Ask if they need some time to sit quietly and absorb what has been said
• Indicate your availability to answer questions in the next few days and beyond
• Providing written notes of the discussion may be helpful for some families.

It may not be possible, practical or appropriate to reach an agreement about the child’s future care in one meeting. In this case, it is important to make a time for further discussions.

Summarise the discussion so far, ideally agreeing to some shared goals for the child. Even if the family refuses to enter into a discussion about advance care planning, it is an opportunity to leave the door open to questions and discussions in the future.

You should ensure the next steps for the child are clear, whether that is withdrawal of life-prolonging therapies, specific symptom management or simply further discussion at a defined time.

Things you can say:

‘I know that talking about these things can be hard to do. If you find you have questions or worries about these issues later on, I would like to help to answer those questions when you’re ready.’

‘I think we agree that you need some time to think about whether going to the intensive care unit is still the best thing for (child) next time they become unwell. In the meantime, I think that we can do a better job with making them more comfortable. Maybe we can discuss your thoughts further at our next appointment.’

‘Thank you for your courage in talking with me about these difficult things. Knowing how you’re feeling and what is important to you really helps me plan the best care for your child.’

Acknowledge the family’s courage. These are harrowing conversations. Close the discussion by asking if there is anything else the parent would like to ask or say.

Things you can say:

‘Is there anything else you want us to know about what you are thinking or how you are feeling about this situation?’

At the end of the discussion, acknowledge the profound nature of what has been discussed and ask if the parents need time and a quiet space to sit and absorb what has been said.

It is also helpful to let them know you will be available to talk further and answer questions. Let them know when you will be available and how they can contact you.

‘We’ve talked about some very difficult things today. You are welcome to sit here for a while if you would like to. I am expecting you will have questions in the next few days and that we will need to talk again. Would it be OK if I came back tomorrow at this time? Please let the nurse or my registrar know if you need to talk before that.’