Implementing advance care planning

  • The objectives of advance care planning implementation 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 required to ensure these discussions occur in an 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 preferences and values of the child and their family.

    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:

    1. establishing robust systems (policies, governance, alerts, documentation, quality improvement)
    2. ensuring an evidence-based and quality approach
    3. increasing workforce capability
    4. enabling children and families to think ahead.

    Priority action 1: establishing  systems

    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:

    • creating an organisation-wide advance care planning policy that is endorsed by executive and clinical leaders
    • identifying executives to actively lead the implementation of advance care planning by providing support, assisting to overcome barriers and allocating resources
    • developing an implementation and communication strategy
    • identifying systems for storage of advance care planning documentation
    • creating alert systems for advance care plans and information pertaining to advance care planning discussions
    • ensuring advance care plans and discussion records are readily accessible to clinicians
    • ensuring advance care plans and discussion records are shared with relevant health professionals across the hospital – community interface
    • auditing advance care planning to inform improvement and embed advance care planning within existing quality systems to ensure continuous improvement
    • working across the broader health system to ensure advance care plans are shared and used appropriately.

    Priority action 2: ensuring an evidence-based and quality approach

    The systems developed to support advance care planning should be based on evidence and informed by quality assurance processes:

    • update policies and procedures to ensure they are consistent with the best available evidence
    • promote research into advance care planning and disseminate findings
    • use information from audits to improve clinical practice (for example, revising clinical triggers for when to offer advance care planning)
    • use mortality review committees to monitor the presence, adherence to and impact of advance care plans on the quality of child’s death
    • audit the documentation of advance care plans through medical record reviews.

    Priority action 3: increase workforce  capability

    In thinking about supporting paediatric health professionals in this work, it is crucial to consider both of the following aspects:

    • understanding and overcoming barriers to undertaking advance care planning discussions
    • increasing capability and confidence by enhancing knowledge and skill.

    Addressing only the second of these two areas will not improve advance care planning.

    Overcoming barriers to 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 families.

    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:

    • normalising advance care planning as a routine element of care in certain clinical conditions 
    • encouraging a team approach where nursing and allied health can be receptive to and gently explore child and parental readiness to discuss advance care planning 
    • creating a culture where doctors feel supported in this work
    • identifying and engaging clinical leaders in advance care planning
    • providing access to mentoring and supervision (including reflective practice through case-based debriefs to identify specific barriers to advance care planning and explore how best to address these)
    • enlisting the support of palliative care specialists who often have particular skills in communicating about difficult issues.

    Increasing capability and confidence by enhancing knowledge and skill

    Enhancing knowledge (the ‘what’)

    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:

    • triggers for advance care planning
    • a discussion guide for paediatricians and other health professionals
    • documents for capturing discussions and decisions
    • case examples.

    Enhancing skill (the ‘how’)

    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:

    • Specialist paediatricians working in tertiary centres are most likely to lead advance care planning, so would benefit from education regarding the practical, ethical and legal aspects as well as how and when to have these conversations. Experiential learning is important for this group.
    • Junior medical staff should be offered education in advance care planning and should have the opportunity to observe advance care planning discussions wherever appropriate.
    • Nursing and allied health staff will contribute to advance care planning discussions and activate advance care plans, so this group should be the focus of education regarding the practical and ethical aspects.

    In addition, tertiary paediatric centres should:

    • develop advance care planning procedures to guide staff
    • provide information to staff through grand rounds and unit-based education sessions
    • ensure advance care planning capability is included in position descriptions for relevant staff clinicians.

    Priority action 4: enabling children and families to ‘think ahead’

    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:

    • identify triggers for advance care planning and embed this into care pathways for relevant conditions
    • provide families of children who have life-limiting conditions with written information to help them with advance care planning. The Royal Children’s Hospital Children’s Bioethics Centre has partnered with staff at the University of Adelaide to produce Caring decisions, a booklet and website for parents of children with life-limiting conditions who are facing major decisions regarding their child’s care (Xafis et al. 2015). These resources are designed to help parents think through these decisions. The website can be found here.
    • consult with the tertiary centre’s community advisory committee in developing strategies for implementation
    • incorporate patient and family experience of advance care planning into existing feedback systems.