How advance care planning is different in the paediatric setting

  • Advance care planning in the paediatric setting differs in a number of important ways from advance care planning in the adult setting.

    One of the key differences lies in determining which children advance care planning should be offered to. It would not be appropriate to ask the families of all children who access paediatric health services to engage in advance care planning. Life-limiting conditions are relatively uncommon in childhood and the vast majority of children who access health services can be expected to survive their illness (Fraser et al. 2012).

    This then raises the challenge of determining which children would benefit from advance care planning and when it should be undertaken (Lotz et al. 2015; Hain et al. 2013; Brook and Hain 2008).

    There are also legal differences with regard to paediatric advance care planning. A child under the age of 18 years does not currently, clearly have the legal status to create an advance care plan. This may change with the Victorian Government’s introduction of the Medical Treatment Planning and Decisions Bill 2016 which, if passed, will provide greater certainty as to the legal status and role of children with decision making capacity in advance care planning from March 2018. In the meantime it is important to solicit, consider and respect the views of children and their families.

    Although parents may be present to participate in decision making at the time of an acute deterioration, the process of advance care planning remains important. Thinking in a crisis, when emotions are high, is difficult and parents and older children may have clear preferences to communicate. There may be interventions they do not want under any circumstances.

    Advance care plans are particularly valuable in circumstances where the child may be in the care of extended family, carers, school or hospital staff at the time of an acute deterioration.

    There are a number of other features that make paediatric advance care planning different from adult advance care planning:

    • The course of many of the life-limiting illnesses that affect children are rare and can be difficult to predict (Brook and Hain 2008).
    • Paediatricians, rather than general practitioners, tend to lead advance care planning in the paediatric setting due to the rarity and complexity of life-limiting illnesses affecting children.
    • Advance care planning is not relevant for the vast majority of children who come into hospital, because they will recover and go on to live a full life. It is not appropriate for advance care planning to be a standard process in paediatric care in the way that it might be for older adults.