Director, Pediatric Ethics Program Children's National Hospital Bethesda, Maryland
Abstract: Evidence is growing that parents experience ethical dilemmas, particularly when being caregivers for children with medical complexity (CMC). While some parents have initiated ethics consultation, data suggests that significant barriers exist. Resources designed to consider ethical dilemmas in clinical care are almost exclusively available to clinicians with virtually no written (or other material) available to parents.
The authors will present recent data gathered from a survey of parents of children with medical complexity and explore the interpretation of that data and possible next steps. They will highlight case examples of parents requesting ethical guidance from an ethics consultant, wishing to further understanding foundational and philosophical underpinnings to clinical ethics recommendations.
Finally the authors will explore a broader role of ethics consultancy, where ethics consultation is a direct resource to parents and families including: early introduction (even in the outpatient setting), standardized parent education, and development of written and audiovisual content. These options require further evaluation and may help families frame and walk through existing or potential ethical dilemmas.
Keywords: pediatric ethics consultation, children with medical complexity, barriers
Learning Objectives:
After participating in this conference, attendees should be able to:
1. Examine current evidence on pediatric ethics consultation and what is known about parent experience and the barriers that exist
2. Illustrate recent survey data and case examples from parents of CMC, what they highlight as defining medical ethics, what continues to bother them and their perceptions of ethics consultancy
3. Explore a broader role of pediatric ethics consultancy, where ethics consults might serve as a direct resource to parents of (CMC) who are facing ethical dilemmas.
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