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Including the child

    • Hear the child’s perspective on their illness and treatment
    • Increase their involvement in advance care planning (if desired) as they mature

    Adolescents and even much younger children may have strong preferences about their care. They know better than anyone what it is like for them to be unwell. They will certainly have something to say about what they enjoy, what they find difficult or frightening, 
    what goals they have and what they are hoping for.

    All of these views can be extremely helpful in guiding parents and paediatricians, and they can be easily discussed even if children do not know or understand their prognosis.

    As children mature, their role in advance care planning may increase, but it is not possible to specify an age at which this should occur. Rather, it is a discussion for the parent, paediatrician and if appropriate, the child. The degree to which a child participates will depend on the individual child.

    Many adolescents wish to know if their prognosis is very poor (Pousset et al. 2009). How and when this should be communicated should be discussed ahead of time with the family if possible.

    Advance care planning discussions can be stressful for all involved. Always make sure there is somebody who can accompany the child (or parent) if they choose to leave the meeting.

    Things you can say:

    ‘You know (child) best: do you think he would want to be a part of these discussions?’

    ‘Would you like (child) to be in the room when we talk about difficult things, or would you like for us to talk with them afterwards?’

    ‘(Child), some people really like to know all the details about their health straight from the doctor, while others would rather have their parents meet with the doctor first and then explain the information to them later. If we ever had anything serious or worrying to talk about, do you have thoughts on which way you’d prefer?’

    ‘(Child), we need to talk about some plans for the future. Would you like your parents and I to talk about it first and then come to you, or would you like to stay and talk together?’