Editorial volume 21 number 2: We have introduced a number of new elements to the Pediatric Ethicscope website over the past several weeks. These changes were prompted by several requests from readers, and most of the changes are aimed at aiding readers wanting to cite and download Pediatric Ethicscope articles for research or teaching purposes. About the cover; about the articles.
How did we get here? Mara, now nearly 17-years-old, was born with a neurogenic bladder. Up until two years ago, she was a model patient. No one worried about her adherence with self-catheterization or medications. She was optimistic about her future, cared about her health, and we looked forward to her bright and open future. But now Mara says,
“I don’t care.”
Information technology in the 21st century has resulted in physicians coming to rely on data. However, when clinicians are conditioned to rely on data and suppress clinical judgment, it becomes difficult to manage rare conditions where data is not available. The following discussion recounts one family’s experience with clinical counseling on a rare diagnosis and highlights these issues.
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).
“Suffering” is a concept that is frequently invoked in discussions about medical decision-making in pediatrics. However, empirical accounts of how the term is used are lacking, creating confusion about the concept and leaving parents and providers unsure about the appropriate ways to account for it in pediatric decision-making. We conducted a qualitative content analysis of pediatric bioethics and clinical literature in selected journals from 2007 to 2017 to determine how authors define and operationalize the term when referring to issues in pediatric treatment.
Pediatric patients who require medical care that is beyond the ability of their family to administer and/or maintain poses numerous ethical questions. Assuming the best interests of the child necessarily compel foster placement, what practical and ethical issues remain?
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.