Background: Pediatric palliative care is a distinct specialty that requires input from pediatric and palliative medicine specialists to provide comprehensive high-quality care. Consultations undertaken early in a child's illness trajectory, when end-of-life care is not anticipated to be required, enables relationships to be established and may enhance the quality of care provided.
Objective: To define optimal components of an early pediatric palliative care consultation.
Design: Consensus of an expert group was sought in a five-round Delphi study.
Setting/participants: Based on the literature and existing standards for specialist palliative care, components of an early pediatric palliative care consultation were derived. In rounds 2 and 3, experts from around Australia participated in online surveys to review and prioritize the components and principles. Consensus of survey items was determined by defined criteria. A flowchart was developed in the fourth round and the final round involved review and refinement of the flowchart by the expert group.
Results: Nineteen experts participated and prioritized 34 components and principles in the first survey round, and 36 statements in the second survey round. There was consensus from all participants that the first priority of a consultation was to establish rapport with the family, and examples of how to achieve this were defined. Other components of a consultation included: establishing the family's understanding of palliative care; symptom management; an emergency plan; discussion of choices for location of care, and a management plan. Components considered suitable to defer to later consultations, or appropriate to address if initiated by family members, included: spiritual or religious issues; discussion around resuscitation and life-sustaining therapies; end-of-life care; and the dying process.
Conclusion: We have provided the first published framework from expert consensus that defines the components and principles of an early pediatric palliative care consultation. This framework will provide guidance for clinical practice as well as being useful for education and research in this area.