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).
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.
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.
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.
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.
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.
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.