• Provide an opportunity to plan ahead for sudden deterioration
  
• Normalise advance care planning as part of the care of children with serious illness
• Use hypothetical scenarios to safely explore values, goals, place of care

In their reflections on the child’s illness and current status, the child or their family may have given clues about their readiness to discuss the possibility of the child’s death and future planning around this.

It will rarely be productive for you to ‘force’ a discussion that the family is not ready to have, although this is sometimes necessary. Creating a safe environment for families and sensitively encouraging them to articulate their fears can sometimes allow a family who are reluctant to talk about advance care planning to begin the process.

Things you can say:

Reflect the family’s language

‘You’ve told me you’re really worried about (child) deteriorating at home. Would it be helpful to get it all out in the open and talk about what we might do if that happened?’

Normalising advance care planning

‘Lots of parents have thoughts about what they might do or what might be needed if we were unable to cure their child. Do you have thoughts like that?’

‘Some parents are planners – they like to think well in advance about what happens if or when their child can’t get better. Does that ring true for you?’

Sometimes it can be helpful to create some distance between the discussion and the child’s situation. Thinking about a hypothetical scenario can slightly reduce the emotion and help facilitate thinking.

Things you can say:

Using  hypotheticals

‘I really hope (intervention) is successful. If there ever were to come a time when (child) was deteriorating despite all of our efforts, have you had any thoughts about how you would want that time to be? For example, where you would want to be.’

Some families will want to make decisions only when death is imminent – to ‘cross that bridge when we come to it’. Some will wish to be a part of the decision, but have the medical team as the ultimate arbiter. Others will never feel able to participate in a discussion or decision making about their child’s death.

While it is your responsibility to ensure that the family has every opportunity to participate in such a discussion, if you have explored the barriers to discussion and the family still does not want to participate in the conversation, it is inappropriate and counterproductive to insist that they do.