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A journal devoted to pediatric bioethics
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In Press
Winter 2019;32(2)
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.
Disengagement and non-adherence of an adolescent with chronic disease potentially leading to life-threatening complications is a common and distressing challenge encountered by pediatricians. Most clinicians intuitively focus on balancing the patient’s emerging autonomy with beneficence and non-maleficence. We believe ‘good care’ may be better understood through the lens of care ethics.
The Use of Suffering in Pediatric Bioethics and Clinical Literature: A Qualitative Content Analysis
“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.
Current Issue
Spring 2019;32(1)
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Overview of volume 32 issue number 1: Informed consent in neonatal clinical trials, home medical care, biases is data-driven medicine, patient worldviews, moral courage, and physician shadowing.
Ethical Analysis of Normative Biases In Data-Driven Medicine
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.
Considerations for Informed Consent in Clinical Trials Involving Neonates
Conducting clinical research in newborns requires special protections due to the high vulnerability of this patient population and their parents. 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).
Medical Complexity Leading to Foster Care
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?
Empathy and the Divide Between Medical and Patient/Family Worldviews
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.
A nurse recounts her experience as a new NICU nurse raising an issue about the appropriateness of a procedure with the rest of the medical team. The narrative addresses issues of power imbalance, ethical controversy, medical decision-making, and moral distress.
Clinical and Surgical Shadowing: A First-Person Account and Ethical Analysis
Shadowing has become, if not an explicit requirement, important for medical school admission. Shadowing has come under criticism for undermining bioethical principles such as patient autonomy and privacy. Critics argue the practice of shadowing violates the physician's fiduciary duty to the patient. These criticisms are largely based either theoretical concerns or anecdote. This account reviews the criticisms of shadowing and assesses the claims.
Ethics Consult Report: Withdrawal of Artificial Nutrition and Hydration
A medical team considers withdrawal of artificial nutrition and hydration supporting a 6-month-old girl with complex cardiac disease, devastating neurological injury, and ongoing, unmanageable pain. Diffuse neurological injury and severe ischemia in all four limbs offers a bleak prognosis. Drawing on the bioethics literature on the subject, the following case presentation and analysis illustrates how a medical team and family can approach such a situation.
Clinical Ethics Consult Commentary: Promoting Human-Centered Care
When technologically advanced medicine fails to “rescue [a patient] intact from the conditions of her birth,” professionals must rely even more squarely on the foundation of good medicine – human-centered caring. While we do not disagree with Mr. Teti’s ethical analysis, we believe that ethics consultants can (and should) do more to support the medical team in achieving this foundational goal.
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