Pediatric Ethics: Theory and Practice

Dr. Nico Nortjé has been involved with ethics training and research for the past two decades. Nico has a doctorate in Applied Ethics from the University of Stellenbosch (South Africa) and also holds two masters degrees one in Psychology (cum laude) and one in Future Studies (Business) from the same university. He also has a post-graduate diploma in Clinical Counselling from the University of Glasgow (Scotland) and another post-graduate diploma from the University of Pretoria in Medical Law. Nico is a clinical ethicist at the University of Texas MD Anderson Cancer center, where he focuses on facilitating goal concordant care of patients. In this role he applies theory to practice and is also involved in professional ethics development of health care providers. His research focus is on end-of-life ethics and the intersection of decision-making in the Intensive Care Units. Dr. Johan Bester is the Director of Bioethics at the UNLV School of Medicine in Las Vegas, Nevada. He teaches bioethics, epidemiology, and evidence-based medicine and provides oversight to ethics content throughout the curriculum. His research focuses on pediatric ethics, vaccination ethics, issues related to autonomy, and justice. Dr. Bester completed his medical degree at the University of Stellenbosch in South Africa. He practiced medicine for 12 years before making a switch to full-time bioethics. This included completing a Master’s degree and PhD in Applied Ethics. Prior to joining the UNLV School of Medicine, he completed a year of fellowship training in bioethics at Cleveland Clinic and worked an additional year as bioethicist at the Clinic. Johan writes extensively on issues related to the health and wellbeing of children, vaccinations, and justice.

• Part 1: Theory.- Chapter 1. The Main Challenges in Pediatric Ethics from Around the Globe.- Chapter 2. A Developmental Perspective on Pediatric Decision-Making Capacity.- Chapter 3. The Child’s Right to an Open Future: Philosophical Foundations and Bioethical Applications.- Chapter 4. The Best Interest Standard and Its Rivals: The Debate About Ethical Decision-Making Standards in Pediatrics.- Chapter 5. Two Ethical Foundations for Pediatrics: The United Nations’ Convention on the Rights of the Child and Bioethical Principles.- Chapter 6. A Contextual Architecture of Praxis in Pediatric Case Consultation.- Part 2: Practice.- Chapter 7. Parental Permission, Childhood Assent, and Shared Decision-Making.- Chapter 8. Telling the Child: Ethics of the Involvement of Minors in Health Care Decision-Making and in Considering Parental Requests to Withhold Information from their Child.- Chapter 9. Parental Refusal of Beneficial Treatments for Children: Ethical Considerations and the Clinician’s Response.- Chapter 10. Caring for Adolescents: Unique Ethical Considerations.- Chapter 11. Demands for Harmful Treatments in Pediatrics and the Challenge of Reasonable Pluralism: a Quasi-Clinical Ethics Consultation.- Chapter 12. Family or Community Belief, Culture, and Religion: Implications for Health Care.- Chapter 13. Children Requiring Emergency Health Care.- Chapter 14. Ethical Issues and Considerations for Children with Critical Care Needs.- Chapter 15. End of Life: Resuscitation, Fluids and Feeding, and ‘Palliative Sedation’.- Chapter 16. Medical Futility in Pediatrics: Goal-Dissonance and Proportionality.- Chapter 17. Newborns with Severe Disability or Impairment.- Chapter 18. Neonatal Euthanasia and The Groningen Protocol.- Chapter 19. Genetic Testing and Screening of Children.- Chapter 20. Enhancement Technologies and Children.- Chapter 21. Predicting Childhood Neurologic Impairments: Preparing for or Prejudicing the Future?.- Chapter 22. Ethics of Pediatric Gender Management.- Chapter 23. The Child with Cancer: Blurring the Lines between Research and Treatment.- Chapter 24. Reproductive Controversies: Fertility Preservation.- Chapter 25. The Ethical Principles that Guide Artificial Intelligence Utilization in Clinical Health Care.- Chapter 26. When Should Society Override Parental Decisions? A Proposed Test to Mediate Refusals of Beneficial Treatments and of Life-Saving Treatments for Children.- Chapter 27. Vaccine Ethics: Ethical Considerations in Childhood Vaccination.- Chapter 28. Society’s Obligations to Children.- Chapter 29. Pediatric Resource Allocation, Triage, and Rationing Decisions in Public Health Emergencies and Disasters: How do we fairly meet health needs?.