Figure 1: Overview of the 10 essential elements in the Consensus Statement PROCESSES OF CARE ORGANISATIONAL PREREQUISITES FAMILY CENTRED CARE Children and families are part of decision making about end-of-life care 6. LEADERSHIP & GOVERNANCE Policies and systems for end-of-life care 2. TEAMWORK Clinicians work together to provide end-of-life care 7. EDUCATION & TRAINING Clinicians have the skills and knowledge to provide end-of-life care 3. GOALS OF CARE Clear goals improve the quality of end-of-life care 8. SUPERVISION & SUPPORT Clinicians providing end-of-life care are supported 4. USING TRIGGERS Triggers identify when children need end-of-life care EVALUATION & FEEDBACK The quality of care is measured and improved 5. RESPONDING TO CONCERNS Clinicians get help to rapidly respond to a childs suffering SUPPORTING SYSTEMS Systems align with NSQHS Standards to improve outcomes
training and education requirements access to professional clinical supervision, and formal and informal debriefing, to suit the varied of clinicians access to support and debriefing for clinical staff evaluation, audit and feedback processes, and reporting requirements. The health service organisation should identify potential variations in the application of the policy framework that might exist in different circumstances (such as at different times of day or in satellite locations). The health service organisation should establish policies and processes for advance care planning, and tissue donation, limitations of medical treatment, symptom management and end-of-life decision-making to ensure that the care delivered in response to deterioration is consistent with appropriate clinical practice, the child and their parents’ expressed wishes, and the best interests of the child. The health service organisation should establish a formal governance process to oversee the development, implementation and ongoing review of systems for care. If a committee has this role, it should: have appropriate responsibilities delegated to it, and be accountable for its decisions and actions to the executive monitor the effectiveness of interventions and education have a role in reviewing performance data provide advice the allocation of resources include consumers, interdisciplinary team members, managers and executives. The health service organisation should develop systems to ensure that essential resources required for the provision of safe and high-quality paediatric end-of-life care (e.g. private space for family meetings, equipment and medications, memory making materials, access to toys and education resources) are always operational and available. The health service organisation should work with local community-based service providers and families to build capacity for children to be cared for in the preferred place of care (e.g. at home).
Measures of the safety and quality of end-of- life care could include: effectiveness of treatment of symptoms recognition of the child’s disease trajectory documentation of the child and their parents’ wishes, and alignment of these wishes with actual care real-time feedback on child and family experiences of care feedback on experiences from families of children who received care whether any existing advance care plan was enacted the category of (expected/unexpected/ diagnosis) the time lapse between deciding to palliate or referring to specialist palliative care, and death transfers of care in the last week of life (e.g. transfers to or from intensive care). Methods for collecting data could include: retrospective of case notes (e.g. documentation of discussions, the child and their parents’ preferences, anticipatory plan of care and plan of care in the terminal phase; appropriateness and frequency of clinical observations) medication chart safety review (e.g. to determine whether inappropriate medications were stopped, and palliative medications were prescribed and administered appropriately) follow-up with families, clinicians and other staff involved in the child’s care use of tools developed for specific settings (e.g. the Family Satisfaction in Intensive Care Survey) multidisciplinary mortality and morbidity review. The health service organisation should implement processes to routinely review the safety and quality of all deaths and determine if end-of-life care could have been improved.