In this section
The objectives of advance care planning implementation are to:
Achieving these objectives requires a system-wide approach.
Tertiary paediatric centres are involved in providing care at some stage to almost all children who have life-limiting conditions. Consistent with the priority action areas described in Advance care planning: have the conversation; A strategy
for Victorian health services 2014–2018 (Department of Health 2014), these centres should enable advance care planning by addressing the following priority action areas:
Successfully implementing advance care planning requires an organisation-wide approach that is multi-faceted, well supported and systematic in its approach.
The following are enablers:
The systems developed to support advance care planning should be based on evidence and informed by quality assurance processes:
In thinking about supporting paediatric health professionals in this work, it is crucial to consider both of the following aspects:
Addressing only the second of these two areas will not improve advance care planning.
Paediatricians often experience feelings of grief, failure and guilt when they cannot cure a child’s condition (Papadatou et al. 2002; Baverstock and Finlay 2006). These emotional responses may lead them to avoid difficult and painful discussions with
Meanwhile, families may want to have these discussions, but have a sense that it is not an appropriate topic to raise.
Such a complex set of circumstances requires a sophisticated response. Recommended strategies include:
This includes knowledge regarding which children should have an opportunity to create an advance care plan and when, what concepts need to be discussed, and how to frame these discussions. The Thinking ahead framework provides an approach to paediatric advance care planning and includes:
Theoretical knowledge about what to discuss with families and how is not sufficient to ensure advance care planning will progress in a way that is optimal for families and health professionals. Nor does practice in and of itself improve skill level. In fact, it may simply reinforce patterns of behaviour that are not effective.
The available evidence shows that experiential learning is required to change behaviour (Kurtz, Silverman and Draper 2005; Fellowes, Wilkinson and Moore 2003). This involves practice with a skilled facilitator, such as with an actor in a small group setting. Practice through role playing, mentoring, and
feedback can support people to improve skills and to become confident in conducting these difficult conversations. We recommend that paediatricians and other health professionals involved in advance care planning for children take advantage of opportunities to participate in such experiential learning.
Empathy and compassion are also crucial to good clinical communication, as are recognising patient and family cues, understanding their concerns and perspectives, and providing information in a way that is manageable (Silverman, Krutz and Draper 2005).
There is now a considerable body of evidence to demonstrate that effective communication leads to improved health outcomes for patients and families, including reduced distress, greater satisfaction and fewer complaints (Baile et al. 2000; Back, Arnold and Tulsky 2009; Buckman 2002; Clayton et al. 2007;
Fischer, Tulsky and Arnold 2000). It can also lead to better outcomes for doctors in the form of improved work satisfaction and lower rates of burnout. Communicating better need not take longer, in fact, consultation times can be reduced as a result of greater focus and efficiency.
Discussing advance care planning with families will rarely be straightforward but as capability increases, health professionals can hope to feel more comfortable, knowing they are helping families make some of the most difficult decisions they will ever face.
With this in mind, tertiary paediatric centres should offer multifaceted training for staff in both the development and activation of advance care plans. Training should be tailored to staff individual needs:
In addition, tertiary paediatric centres should:
There is a delicate balance to be found between enabling children and families to participate in advance care planning, and not being intrusive about it. Families who find advance care planning confronting should not be forced to participate.
Tertiary centres should: