It is often very difficult to accurately prognosticate because the trajectory of many childhood diseases can be variable. However, families often want to have some idea of the prognosis so they can plan for the future.

To maintain honesty and accuracy, it is useful to prognosticate in broad or general terms (for example, days to weeks, weeks to months, only a year or two).

Try to avoid terms like ‘not too long’ or ‘soon’ as these are open to interpretation.

Things you can say:

‘When I think of children I have looked after with the same condition, I am concerned that (child) will die in the coming days.’

‘The most likely course for (child) is to gradually become more tired and, I’m so sad to say, they are likely to die in the coming months.’

‘The pace of change can give us some idea of what to expect. If we see that this week is worse than last week and the week before that, we are generally thinking in terms of weeks. If we see that today is worse than yesterday and the day before that, we are thinking in terms of days.’

‘We often feel very humble at times like this because we cannot always predict the future but we will do our best to guide you based on what we see and what we know.’