Understanding a Clinical Ethics Consult: Survey of Parents

AbstractObjective: To explore parents' understanding of clinical ethics consults, what might influence their openness to an ethics consult in the future, and what they define as medical ethics.

Electronic survey of parents of children with complex medical conditions. Questions were adapted from a study of adult patients' and family members' experiences of ethical concerns in the healthcare setting. Respondents were also invited to participate in subsequent interviews.

We surveyed 218 parents and interviewed 28. Most respondents (63%) were not familiar with ethics consults and did not know how to request one (88%). For those reporting interest in a future ethics consult, knowing more about how ethics consults could help (71%) and a doctor's recommendation (58%) would most influence their interest. Hesitancy in speaking with an ethics consultant most often stemmed from worry that their child/family would not be understood (77%). Parents defined "medical ethics" as relating to serious medical conditions (67%), communication with the medical team (61%), and goals of care (57%). Interviews demonstrated generally consistent themes with the survey.

Pediatric ethics consultation is not a commonly recognized or utilized resource for families facing medical complexity and ethical challenges. More needs to be understood about how best to meet patient and family needs via ethics consults.