Care providers of critically ill pediatric patients encounter ethically complex and morally distressing situations in their practice. This study sought to identify whether providers remark on ethical conflicts or note moral distress following recent in hospital pediatric death.
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.
In 1995, the medical establishment concluded genetic tests in minors should not be done outside of diagnosis of a treatable disease. The AAP concluded likewise in 2001 and 2013. A new phenomenon is emerging: young women of BRCA positive mothers are requesting genetic testing, and positions have softened with the recognition that some exceptions can be justified.
Since Henry Beecher’s 1966 revelation of the scandal at the Willowbrook School, the ethics of biomedical research involving pediatric subjects has never been the same. Throughout history, the conversation about non-therapeutic pediatric research has moved from access to protection only to return to access once more.
Shortages of life-saving chemotherapeutics and supportive care agents are pervasive and enduring. These shortages represent a true public health crisis, and surprisingly, have failed to garner greater attention within the medical community or the public at-large.
Clinicians in the adult system are infrequently prepared to treat the variety of conditions seen in pediatrics, and the few providers who are available to this population struggle to absorb the growing number of older patients with childhood-onset disorders. Patients are frequently ill prepared to take on the responsibilities required to manage their own care; the pediatric system lacks functional processes for teaching patients how to develop these skills.