So why is it that we clinicians are so often uneasy when talking about patient suffering? One simple explanation would be that, in our era of the most extraordinary scientific discoveries, this topic has been neglected because it is so profoundly subjective, impossible to measure, quantify or compare. I propose an additional explanation; entering the world of suffering compels a response that we are not sure we can deliver. Our doubts originate in shortcomings of the health care system itself, neglect by the educational system, and from the burden of our own suffering.
Use of sedation and restraints is sometimes the only means available to stabilize medically fragile eating disorders patients. While minors are not given the option to refuse care that competent adults are, forced tube feeding nonetheless challenges the minor patient’s senses of identity and control. The following case study chronicles the management of an 11-year-old patient transferred from inpatient child psychiatry unit to the adolescent medicine service for nutritional rehabilitation.
Conflicts between parents and health care providers are among the most common of the ethical issues encountered in pediatrics. In this article, three cases are presented along with an ethical framework for thinking about cases in which parents and providers disagree.
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.