In this section
Each year, hundreds of children in the state of Victoria live with or die from life-limiting conditions (Consultative Council on Obstetric and Paediatric Mortality and Morbidity 2014).
It is possible to plan ahead for interventions that reflect the preferences of the child and their family and the recommendations of the treating team in the event of an acute deterioration. This helps to ensure these children are not subjected to burdensome medical treatments that do not offer substantial
benefit. It also helps families to prepare for the future, consider priorities and plan where they would hope to be (home, hospital, hospice) when their child reaches the end of their life (Wolff, Browne and Whitehouse 2011).
Although many children with life-limiting conditions die in circumstances where their death is anticipated well in advance, conversations about what treatments the child and their family would prefer and the treating team recommend, tend to occur late in the illness course, often in the last few hours or days of the child’s life (Feudtner et al. 2011; Heckford and Beringer 2014; Stark, Hynson and Forrester 2008). This can lead to unnecessary suffering for the child and distress for the parents and siblings, and may deny families choices regarding place of care (Stark, Hynson and Forrester 2008).
Advance care planning in the paediatric setting has particular challenges (Horridge 2015; Lotz et al. 2015). It is obviously a highly emotive subject for both families and health professionals, as no one wants to contemplate or discuss the possible death of a child. Like any difficult task, those involved may find
ways of delaying these conversations, or avoiding them altogether.
Unfortunately, avoidance is not without negative consequences. It denies children and families the opportunity to voice an opinion about the care they really want to receive and where they want that care provided, and it may mean they do not have the
chance to say and do things that are important to them.
There is evidence that helping parents understand their child’s prognosis and emotionally and practically prepare for their child’s death reduces the likelihood of complicated grief (Lotz et al. 2015; Meert, Thurston and Thomas 2001).
This companion document for Advance care planning: have the conversation – a strategy
for Victorian health services
2014–2018 (Department of Health 2014) seeks to:
The overall objectives of advance care planning in the paediatric setting are to:
The primary audience for this companion document is:
As health services operate within the broader health and social service systems, the directions and actions outlined in this document are also relevant to a range of other service providers (for example, schools).