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Ethics Rounds: A Casebook in Pediatric Bioethics

The ethical issues that arise in pediatrics are very different from those that arise in other clinical settings. The differences arise partly because young children cannot make decisions for themselves. Thus, the principle of autonomy, a principle that is so important in resolving the dilemmas that arise in the care of adults, is irrelevant in ethical dilemmas involving young children. It is partially relevant in older children and adolescents. Furthermore, autonomy is, essentially, a procedural principle. It doesn’t claim to determine what choice is right. It only specifies who should be empowered to make the decision about what is right. Without the ability to fall back on autonomy, doctors, parents, and ethicists who are caring for children must make substantive decisions about what is best for those children. To do so, they rely on a number of ethical considerations. 

This collection presents a series of cases that highlight some ethical dilemmas that arise in pediatrics. The use of cases to teach bioethics is controversial. The dominant theoretical approach to bioethics in America today relies on ethical principles such as autonomy, beneficence, and justice. Many people are familiar with the principal-based approach articulated by Beauchamp and Childress in their influential book, Principles of Biomedical Ethics.1 Beauchamp and Childress suggest that 4 principles—autonomy, beneficence, non-maleficence, and justice—provide an analytical framework that can help clinicians think through difficult ethical dilemmas and choose the best solution. This approach is theoretically appealing. A large part of its appeal is its promise of providing a principled solution to moral problems. Arras quotes a graduate of a bioethics training course that used this approach, “This [method] is what our student-doctors need. It’s really objective, based on principles, just like a science.”2

John D. Lantos, MD
Associate Editor of Pediatrics
Professor of Pediatrics, University of Missouri–Kansas City
Director, Children’s Mercy Hospital Bioethics Center
 

References
1. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 7th ed. Oxford, UK: Oxford University Press; 2012
2. Arras J. Principles and particularity: the roles of cases in bioethics. Indiana Law J. 1994;69:983–1014

 A print version of this collection will be available on shopAAP in May.

Contents

End-of-Life Decisions​
A Premature Infant With Necrotizing Enterocolitis Whose Parents Are Jehovah's Witnesses
A Saudi Family Making End-of-Life Decisions in the PICU
Symbolic Resuscitation, Medical Futility, and Parental Rights
Palliative Sedation With Propofol for an Adolescent With a DNR Order
Parental Refusal of a Liver Transplant for a Child With Biliary Atresia
When Life-Sustaining Treatment Is Withdrawn and the Patient Doesn’t Die
Is Treatment Futile for an Extremely Premature Infant With Giant Omphalocele?
Cross-Cultural Differences in Communication About a Dying Child
Are We Allowed to Discontinue Medical Treatment in This Child?
Two Infants, Same Prognosis, Different Parental Preferences

Different Philosophies
A 6-Month-Old With Vaccine-Hesitant Parents
Should Pediatric Practices Have Policies to Not Care for Children With Vaccine-Hesitant Parents?
When Parents Refuse a Septic Workup for a Newborn
Should All Deaf Children Learn Sign Language?
Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment?

Genomics
Genomic Contraindications for Heart Transplantation 
Please Test My Child for a Cancer Gene, but Don’t Tell Her
Testing Children for Adult-Onset Genetic Diseases

Severe Disability
Mechanical Ventilation for a Child With Quadriplegia
An Infant With Trisomy 18 and a Ventricular Septal Defect
A Baby With Meningococcemia and Septic Shock

Research Ethics 
Should an IRB Approve a Placebo-Controlled Randomized Trial of Analgesia for Procedural Pain in Neonates?
When Is Waiver of Consent Appropriate in a Neonatal Clinical Trial?
Risks in a Trial of an Innovative Treatment of Duchenne Muscular Dystrophy
Randomized n-of-1 Trials: Quality Improvement, Research, or Both?

Law and Health Policy 
Can a Patient Designate His Doctor as His Proxy Decision Maker?
Who Should Get the Last PICU Bed?
Was Sarah Murnaghan Treated Justly?
Should We Tell Parents When We’ve Made an Error?
When a Surgical Colleague Makes an Error 
The Dilemma of Predicting Violent Radicalization

 

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