This paper presents guidance developed by a multidisciplinary group of bioethicists and patient advocates considering patient- and parent-centric approaches to informed consent in neonatal research in the context of an ongoing clinical trial for neonates with spinal muscular atrophy (SMA).
A lack of empathy while standing in as a translator for another physician’s patient and family raised the following question: can one be culturally insensitive to one’s own culture? The following narrative explores the divide between medical and patient/family worldviews.
These…life-sustaining innovative therapies that require an ethical framework for shared decision-making with families and medical teams. We suggest a way of structuring team education to benefit urgent ECLS decisions for newborns with moderate to severe hypoxic ischemic encephalopathy (HIE).
Doctors revise their diagnostic strategy to provide a timely and meaningful prognosis in accordance with parental goals. This narrative discusses issues of diagnostic uncertainty and the value of relying on clinical gestalt when trying to prioritize medical tests for a sick patient.
Chris Feudtner MD, PhD, MPH delivered the Sanford L. Leikin Memorial Lecture in Pediatric Ethics at Children’s National Medical Center. Here he discuses a case brought by one of the hospital units.
The decision to discuss sudden unexplained death in epilepsy (SUDEP) presents a complicated ethical picture with potentially conflicting principles. The neurologist must decide how to disclose and discuss the problem of SUDEP, balancing the desire to help families by empowering them, without doing harm by overwhelming them with fear.