• Gently open the door to discussions about difficult decisions
• Normalise advance care planning as something that happens routinely for children with certain conditions
• Emphasise the fact that you want to provide the best possible care for the child

Families are better able to deal with difficult or confronting information if it does not come as a surprise, and if they have effective supports to help them in decision making. Ideally, these discussions should begin while the child is well.

It is worthwhile flagging advance care planning discussions ahead of time, in order to give families the opportunity to rally their support networks and feel supported in their decision making. Many people find it hard to think clearly in a crisis.

Normalising the conversation can be helpful – let the family know that this is something you do for all patients who come to this stage of this illness.

Things you can say:

‘While (child) is well, it’s a good time to start thinking about what your family might want for them if or when they become more unwell in the future. Then you will not be trying to make difficult decisions about (child’s) care for the first time when they’re very sick and your mind is taken up with the stress of their illness.’

‘For all my patients with (this diagnosis or trigger), I have a talk with the family about what we might do if (child) is more unwell next time. Maybe we can make a time when both you and your partner are available.’

‘I’m concerned about how (child) is travelling, and I want to make sure we all have a chance to talk about our plans for their care next time they’re unwell.’