• Share your concerns
• Use plain language
• Check understanding.

There are times when you will need to direct the conversation towards ‘planning for the worst’. It is important to be honest about your concerns for the child, but allow the family to maintain hope if possible (Mack et al. 2006).

Try to use plain language as much as you can. It can be hard to say the words ‘death’ and ‘dying’ but euphemisms are often confusing. Some parents report that they had to work out what was happening for themselves because clinicians avoided using direct language. Obviously, such words need to be said with empathy and compassion.

Only use medical terminology if you are sure that the family understands it and you feel that it will advance the conversation.

Always check the family’s understanding of the information you have presented. It may be important to pause to allow the family to take in the information you have provided.

Things you can say:

‘I am hoping that we will be able to control your child’s disease. I am also worried that this time we may not be successful.’

‘Although we do not know for certain what will happen for your child, I am worried because in my experience most children with this disease eventually die.’

‘I have been noticing that (child) seems to be sick more and more often. I have been hoping that we would be able to make them better, but I am worried that their illness has become more difficult to control and that soon we will not be able to help them to get over these episodes.’

‘In my experience, a child with (child’s) underlying illness, who has this many severe lung infections, is coming to the end of their life.’

‘It’s important to plan for changes in your child’s health. It will be so much more difficult to discuss these things when they are very unwell or dying and everyone’s emotions are very high.’

‘Would it be helpful to talk about what to expect as (child’s) illness worsens?’

‘I am so sorry to say that (child) is dying now. We don’t have a say in that but we do have a say in what that will be like for them.’