Berlinger N, Barfield R, Fleischman AR. Facing Persistent Challenges in Pediatric Decision-Making: New Hastings Center Guidelines. Pediatrics 2013; DOI: 10.1542/peds.2013-1378
Approximately 50,000 deaths occur among pediatric patients (neonates, infants, children, and adolescents) in the United States each year. These deaths are a small fraction of the 2.5 million annual deaths in the United States, but they have an immense impact on the families and clinicians who care for these patients.
Persistent challenges in providing care to seriously ill pediatric patients continue, despite evidence-based approaches to treatment decision-making, the emergence of pediatric palliative care as an interdisciplinary subspecialty, and the growing number of children’s hospitals. Clinicians report significant lack of knowledge about ethical and legal issues that have been addressed and seemingly resolved by consensus groups and major pediatric organizations.1 They voice concerns of conscience about providing end-of-life care. Most agree that we sometimes save the life of a child without sufficient regard for the profound consequences of our interventions on a child’s subsequent quality of life. These knowledge gaps and professional concerns may lead to tension within teams and confusion about how to provide good care. This article is written to introduce pediatric clinicians to several relevant aspects of a set of ethics guidelines recently published by the Hastings Center, an independent, nonprofit bioethics research institution that since 1969 has been a major source of interdisciplinary research on ethical challenges in clinical medicine.2 The new guidelines update the first edition (1987) and include a major new section on pediatric decision-making, with other material relevant to the care of children, building on research and practice insights from pediatric subspecialties, pediatric palliative care, and interdisciplinary bioethics. We will address key challenges and their implications for all professionals who aim to understand, respect, and provide good care to children and families, throughout treatment and at the end of life.
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