Transfusion Refusals in Pediatrics: From Shared Decision Making to Court Orders

In pediatrics, parents (legal guardians) are the primary medical decision-makers for their minor children: they know their children well and are most inclined to act in their best interest. As autonomous adults, parents have wide latitude to refuse recommended medical treatment for themselves, however this same broad autonomy does not extend to their children. Pediatric providers have a fiduciary responsibility to a child’s health and well-being, intervening when parental decision-making places a child at risk of serious harm. When parental decision-making conflicts with provider recommendations, there is often a role for open, honest discussion with families in hopes of identifying mutually acceptable solutions.

This session will examine parental refusals when transfusion of a blood product is medically indicated or reasonably anticipated, an event which is more common among families whose religious affiliation is as a Jehovah’s Witness (JW). We will review the ethical principles commonly applied to evaluations of parental decision-making and briefly present original data from a retrospective review of JW data from over 50 years. We will present a shared decision-making approach for working with JW families which we believe fosters communication and creates inclusive spaces for dialogue with families. Real-world pediatric cases, including some involving adolescents as additional decision-makers, will demonstrate the range of possible solutions for managing conflicts around transfusion refusals in pediatrics, including circumstances when court orders may be recommended. Although we focus on transfusion refusals, participants can apply the material presented in this session to navigating other refusals of recommended therapy in pediatrics.

Kim E. Sawyer, MD – Texas Children's Hospital; Yoram Unguru, MD, MS, MA, HEC-C – Attending Physician and Associate Professor, The Herman and Walter Samuelson Children's Hospital; Deena Levine, MD – St. Jude Children's Research Hospital