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Components and principles of a pediatric palliative care consultation: results of a Delphi study
Natalie Bradford1, Anthony Herbert, Christine Mott
11 Centre for Online Health, University of Queensland , Royal Children's Hospital, Queensland, Australia .
Insights
Early pediatric palliative care consultations establish family rapport and focus on symptom management and care planning. This expert-defined framework guides practice, education, and research for high-quality child healthcare.
Area of Science:
- Pediatric Medicine
- Palliative Care
- Healthcare Quality Improvement
Background:
- Pediatric palliative care is a specialized field requiring multidisciplinary input for comprehensive care.
- Early consultations, even when end-of-life care is not imminent, can build relationships and improve care quality.
Purpose of the Study:
- To define the optimal components of an early pediatric palliative care consultation.
- To establish a consensus-based framework for initial pediatric palliative care interactions.
Main Methods:
- A five-round Delphi study involving 19 Australian experts in pediatric and palliative medicine.
- Online surveys were used to prioritize components and principles derived from literature and existing standards.
Main Results:
- Experts prioritized 34-36 components and principles for early consultations.
- Key priorities included establishing family rapport, assessing understanding of palliative care, symptom management, emergency planning, and care location discussions.
- Topics deferred to later consultations included spiritual issues, resuscitation, life-sustaining therapies, and end-of-life care.
Conclusions:
- The study provides the first published expert consensus framework for early pediatric palliative care consultations.
- This framework offers guidance for clinical practice, education, and research in pediatric palliative care.
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.
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