Volume 32 Number 1

2019 Spring Editorial

Editorial: normative biases in data-driven medicine; clinical trials involving neonates; medical complexity and foster care; empathy and patient/family worldview; moral courage; ethics of physician shadowing.

Ethical Analysis of Normative Biases In Data-Driven Medicine

Evidence based 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).

Unintended Consequences of the Increasing Complexity of Home Medical Care

complex medical care can lead 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

Physician discusses diagnosis with patient's parents.

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.

Moral Courage in Practice

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.

Volume 31 Number 1

From the Editors

Overview of Pediatric Ethicscope 2018 Spring Volume 31 Number 1

Referral for Extracorporeal Life Support in Newborns with Hypoxic Ischemic Encephalopathy

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).

Embracing Diagnostic Uncertainty

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.

Dialogue with the Ethicist: Chris Feudtner MD, PhD

Chris Feudtner MD, PhD, MPH visited Washington, D.C. this past Spring to give the Sanford L. Leikin Lecture Memorial Lecture for Ethics in Pediatric Care at Children’s National Medical Center. Following the lecture, he sat down with hospital staff, ethics committee members, and local ethicists to discuss a past case.

Transgressing Moral Imperatives

Providers of critically ill pediatric patients encounter complex, morally distressing situations. However, ethical training is limited and current approaches to ethics consultation may not meet the emotional and debriefing needs of providers.

The Ethics of Disclosing and Discussing SUDEP with Families of Children Newly Diagnosed with Epilepsy

The decision to discuss sudden unexplained death in epilepsy (SUDEP) presents a complicated ethical picture with potentially conflicting principles. The neurologist must decide how to disclose and discuss the problem of SUDEP, balancing the desire to help families by empowering them, without doing harm by overwhelming them with fear.

Ethical issues in Genetics Research

While not different than with other kinds of research, issues in genetics research involving children can present differently and can be more challenging to manage

Doctor, I want BRCA testing for my girl

In 1995, the medical establishment concluded genetic tests in minors should not be done outside of diagnosis of a treatable disease. The AAP concluded likewise in 2001 and 2013. A new phenomenon is emerging: young women of BRCA positive mothers are requesting genetic testing, and positions have softened with the recognition that some exceptions can be justified.

The Inclusion Of Children In Non-therapeutic Medical Research

The debate about non-therapeutic pediatric research occurs over the balance between protecting child participants and ensuring the knowledge we need to threat the conditions children suffer from.

Education in Ethics: Children’s Mercy Bioethics Center Certificate Program in Pediatric Bioethics

Volume 30 Number 2

Proem

An opening thought: sometimes cases in clinical ethics conclude, but leave a thought that remains just out of reach. In the wake of the case, a nagging sense of something meaningful yet elusive, like a broken outline, or a silhouette that can't quite be brought into focus–remains. We invite you to consider the following.

Introducing Pediatric Ethicscope

As we launch online as an open-access journal, Pediatric Ethicscope is now entering its 30th volume; it has, and will continue, to present the work of multidisciplinary contributors sharing diverse and nuanced perspectives on issues of import to pediatric medical ethics. Our aim is to disseminate the best and latest thinking on pediatric ethics. This is how we got here...

Shortages of Drugs, Surpluses of Ethical Challenges

Shortages of life-saving chemotherapeutics and supportive care agents are pervasive and enduring. These shortages represent a true public health crisis. In the United States, shortages of drugs, including chemotherapy and supportive care agents, have become a “new normal.”

Drug Shortages at Children’s National

Jeffrey Dome MD, PhD, the Division Chief of Hematology and Oncology at Children's National, sat down with Pediatric Ethicscope to discuss the impact of drug shortages and how they are managed a large pediatric institution.

Dialogue with the Ethicist: Yoram Unguru, MD, MS, MA

A set of twins was transferred to NICU; 25-weekers who came in for a neurosurgery consult on Friday. They both had significant brain bleeds, white matter loss, and hydrocephalus. One of the infants was better off than the other, but both had midline shift and were seizing. Physician and ethicist Yoram Unguru MA, MS, MD discusses the case.

Transitional Care for Adolescents: From Concept to Practice

Clinicians in the adult system are infrequently prepared to treat the variety of conditions seen in pediatrics, and the few providers who are available to this population struggle to absorb the growing number of older patients with childhood-onset disorders. Patients are frequently ill prepared to take on the responsibilities required to manage their own care; the pediatric system lacks functional processes for teaching patients how to develop these skills. Marcela Monti discusses transitional care for adolescents.

Shortages: The New Normal in Pharmacy

In recent years, dealing with drug shortages has become an integral part of a pharmacists work. Learn about the causes, management, and prevention from the pharmacists' perspective.

What Lies Beneath

Historical and axiological analysis of the drug shortage issue reveals drug pricing and differing values are inextricably linked to the problem.

From Classroom to Clinic

Students rush into the halls to watch another fight. While some hoot and holler, others whisper, “they belong at Hartgrove.” Former south side of Chicago teacher, Joseph Lee MD discusses his journey from teacher to physician.

Ethics Education: Harvard Clinical Bioethics Course

From July 7 through July 9th 2016, the Harvard Center for Bioethics held its annual Harvard Clinical Bioethics Course at the Harvard Medical School in Boston. Nearly thirty hours of lectures, discussion groups, working lunches, and even a play were presented over those three days. Pediatric Ethicscope reports.