Understanding a Clinical Ethics Consult: Survey of Parents

Area of Science:

• Pediatric healthcare ethics
• Clinical ethics consultation services

Background:

• Families of children with complex medical conditions face significant ethical challenges.
• Understanding parental awareness and utilization of clinical ethics consults is crucial.

Purpose of the Study:

• To assess parents' comprehension of clinical ethics consults.
• To identify factors influencing parental openness to future ethics consults.
• To understand parents' definitions of medical ethics.

Main Methods:

• Electronic survey distributed to 218 parents of children with complex medical conditions.
• Interviews conducted with 28 parents to further explore survey findings.
• Survey questions adapted from a study on adult patients' ethical concerns.

Main Results:

• 63% of parents were unfamiliar with ethics consults; 88% didn't know how to request one.
• Key influences for future consults included understanding benefits (71%) and physician recommendation (58%).
• Primary hesitancy stemmed from fear of not being understood (77%); parents defined medical ethics around serious conditions, communication, and goals of care.

Conclusions:

• Pediatric ethics consultation is underutilized by families navigating complex medical situations.
• Further research is needed to optimize ethics consult services for patient and family needs.