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:
- define advance care planning as it applies in the paediatric setting (that is, for persons under the age of 18 years)
- outline how advance care planning is different in the paediatric setting, including the ethical and current legal considerations
- provide a framework for advance care planning in the paediatric setting (the Thinking ahead framework) including:
- a set of triggers for advance care planning
- a flowchart outlining a recommended approach
- a series of documents to capture discussions and decisions
- a discussion guide to assist paediatric health providers discuss advance care planning with families
- describe the use of advance care planning in clinical care
- outline a recommended approach to the implementation of advance care planning in tertiary paediatric centres.
The overall objectives of advance care planning in the paediatric setting are to:
- ensure the opportunity to think about and discuss goals of care is offered to the right children and their families at the right time
- provide health professionals with the skills and knowledge they need to ensure these discussions occur in a timely, effective and compassionate way
- ensure discussions and any decisions made are documented and communicated to relevant services and health professionals
- enable those who respond to any acute deterioration in the child’s condition to manage the situation in a way that reflects the goals of care.
The primary audience for this companion document is:
- publicly funded paediatric health services
- rural, regional and metropolitan health services who provide care for children
- paediatric nursing and allied health workers
- general practitioners
- children’s hospices and respite facilities
- ambulance services.
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).