- Hilary Cass, President Royal College of Paediatrics and Child Health, United Kingdom (Larcher et al. 2014)

Research conducted in Victoria and internationally indicates that although children with life-limiting conditions often die in circumstances where their death can be anticipated well in advance, conversations about what treatments are and are not in their best interest tend to occur late in the illness course, often in the last few hours or days (Stark, Hynson and Forrester 2008).

This may lead to unnecessary suffering, and it potentially denies families choices regarding place of care. For example, when children die it tends to be in situations of high acuity, often in an intensive care unit (Ramnarayan et al. 2007).

Given that many of these children suffer from life-limiting conditions, it seems reasonable to expect there to be opportunities to consider the best approach to managing an acute deterioration ahead of time. Parents are troubled long into bereavement as a result of their child experiencing a ‘difficult moment of death’ (Kreicbergs et al. 2004; Surkan et al. 2006).

By preparing families and establishing clear goals of care, advance care planning can help to reduce distress for both the child and their family.

Advance care planning is becoming increasingly important as technological advances see more children survive with chronic and complex medical conditions. The lives of these children can be sustained at home with interventions such as non-invasive ventilation, and in hospital with more invasive treatments. The benefits and burdens of these interventions require careful consideration in light of the child’s changing condition and the goals and values of the child and their family.

The Canadian Paediatric Society has published a position statement which asserts that ‘advance care planning is part of the standard of care for paediatricians and other health care practitioners involved in the care of paediatric patients with chronic life-threatening conditions. It is our responsibility to initiate these discussions rather than wait for patients and family members to ask’ (Canadian Paediatric Society 2008). The Royal College of Paediatrics and Child Health, the American Academy of Pediatrics, the British Medical Association and the Royal Australasian College of Paediatrics have all published position statements, policies and frameworks to guide practice in this area (Larcher et al. 2014; American Academy of Pediatrics Committee on Bioethics 1994; Royal Australasian College of Physicians 2008; British Medical Association 2007).

An essential element of paediatric advance care planning is consideration of the child’s voice (Pousset et al. 2009). Children are often excluded from discussions about their illness and treatment in an effort to protect them from distressing information (Bluebond-Langner 1989; Hilden, Watterson and Chrastek 2000). In some cases this is entirely appropriate, in others it is not, and results in decisions being made without crucial information about how the child feels.

The parents’ involvement is also crucial. In the same way that parents protect children from difficult conversations, paediatricians may protect parents. Up to half of all parents have considered the withdrawal of treatment before their child’s paediatrician raises the possibility (Meyer et al. 2002). As difficult as it is, parents would like their child’s medical team to enable them to make decisions about their child’s care (Wharton et al. 1996; Sullivan, Monagle and Gillam 2014; Hammes et al. 2005).

From a policy perspective, advance care planning is a key element of the Victorian state government’s policy, Strengthening care for children with a life-threatening condition 2008–2015 (Department of Health 2008).

The aim of ‘Principle 1: Information and decision-making’, is that ‘children with a life- threatening condition and their families have information about options for their future care and are actively and appropriately involved in those decisions.’ More specifically, ‘the unique needs of the child with a life-threatening condition and their families [should be] addressed through developing and implementing an agreed care plan’.

In its submission to the 2012 Senate inquiry into the provision of palliative care, the Australian and New Zealand Paediatric Palliative Care Reference Group recommended ‘the development of a paediatric addendum to the National Framework for Advance Care Directives 2011’.

A considered and skilled approach to advance care planning can be expected to:

• reduce the suffering endured by children with life-limiting conditions
• increase the opportunity for families to choose non-acute settings for care
• reduce trauma for families as they are better prepared for the end-of-life phase
• enhance job satisfaction for doctors, nurses and allied health staff as a result of enhanced communication, increased clarity and a greater sense of delivering the best possible care for children.