Barriers to advance care planning in the paediatric setting

  • In 2013, the Australian Commission on Safety and Quality in Healthcare reported that it is often much easier for health professionals to continue treatment than to talk with patients and families about the end of life (Australian Commission on Safety and Quality in Healthcare 2013).

    Issues known to contribute to health professionals avoiding these conversations include systemic factors such as shortage of time or lack of appropriately private space; educational factors such as inadequate training and mentoring in the necessary communication skills; and personal factors such as fear of complaints and litigation or discomfort with talking about dying (Australian Commission on Safety and Quality in Healthcare 2013).

    In addition to these, there are particular barriers to advance care planning in the paediatric setting (Forbes et al. 2008; Durall, ZuraKowski and Wolfe 2012). In developed countries such as Australia, parents and health professionals have high expectations of medicine in terms of its ability to cure disease or sustain life. As a community, we are not used to children dying and this may make it difficult to withhold or withdraw interventions.

    Furthermore, many paediatricians experience feelings of grief, guilt and failure when they cannot cure a child’s illness (Papadatou et al. 2002; Baverstock and Finlay 2006). These emotional responses can lead them to avoid conversations about advance care planning. Meanwhile, families may want to have these discussions, but have the sense that it is not an appropriate topic to raise.

    Like their colleagues in adult medicine, paediatricians receive little training in communicating with families about advance care planning, and they face an additional challenge: the relative infrequency of childhood death makes it difficult to develop and maintain skills in this important area of practice.

    The prospect of talking to a child or young person about serious illness and the possibility of death presents a great challenge. As a community and as individuals, we wish to protect children from emotional pain and distress. Well-intentioned efforts to shield children can result in their voice being absent from the decision-making process. This may, in turn, lead to them having to endure treatments they find intolerably burdensome.

    Current approaches to advance care planning internationally are extremely variable and little research has been undertaken (Lotz et al. 2013; Fraser et al. 2010; Finlay et al. 2008; Weiner et al 2012). Common problems with documentation include difficulties accessing information and inadequate sharing of information between services (Beringer and Heckford 2014).