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 is ‘a process of discussions between families and health care providers about preferences for care, treatments and goals in the context of the patient’s current and anticipated future health’ (Spicer et al. 2015).
It is a process in which:
- the clinical team shares with the family knowledge about the child’s condition, prognosis and the potential efficacy and benefit versus the burden of various interventions
- the child and family shares with the clinical team their values, goals and hopes, and what they believe the child might experience as a benefit or a burden.
The objective of advance care planning is to determine the overall goal of medical care, and the interventions that should and should not be provided. This will guide current treatment, as well as future treatment in the event of a deterioration in the child’s condition.
The most important element of advance care planning is the process of reflection and information sharing. This will help families and clinicians to make the best possible decisions if a medical crisis occurs.
This framework is intended to assist paediatricians and other health professionals approach advance care planning. It offers:
- principles upon which to base practice
- a progressive approach to discussions
- tools to capture key information and decisions that have been made and communicate these to other healthcare providers.
It also provides case examples.