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Ethics and Bioethics01:22

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Ethics is a philosophical study of moral actions. Ethics attempts to determine what is valuable for individuals and society. It examines the rational justification of moral judgments and analyzes what is morally just, fair, and right. Bioethics is a sub-discipline of applied ethics that analyzes the philosophical, social, and legal issues in life sciences and medicine. Ethical theories serve as a foundation for decision-making and represent the viewpoints from which people seek direction. They...
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Ethics Roundtable: How Much is Too Much?

Mariana F Theodoro1,2, Jacinda Hays3, Mara DiBartolomeo2

  • 1Graduate Medical Education, Johns Hopkins All Children's Hospital, St. Petersburg, FL, USA.

The American Journal of Hospice & Palliative Care
|April 25, 2022
PubMed
Summary
This summary is machine-generated.

Caring for extremely preterm infants with severe, life-limiting conditions presents ethical challenges when parents desire intensive care. This case highlights the conflict between medical recommendations for comfort care and parental hope for survival in Carmi syndrome.

Keywords:
Carmi syndromeend-of-lifeepidermolysis bullosaethicslife-limiting conditionpalliative care

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Area of Science:

  • Neonatal Medicine
  • Medical Ethics
  • Pediatric Genetics

Background:

  • Discusses the ethical considerations in neonatal intensive care for extremely preterm infants.
  • Addresses the complexities of managing infants with rare, life-limiting genetic conditions.

Observation:

  • Presents a case of an infant born at 28 weeks' gestation diagnosed with Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia).
  • Highlights the divergence between the medical team's recommendation for comfort care and the parents' desire for continued life-sustaining therapies.

Findings:

  • The medical team advocated for a do-not-resuscitate order and transition to comfort care.
  • The parents insisted on pursuing all available intensive care measures, driven by hope for their infant's recovery.

Implications:

  • Underscores the critical need for clear communication and shared decision-making in neonatal palliative care.
  • Emphasizes the importance of balancing medical expertise with parental values and hope in end-of-life care for neonates.
  • Suggests the need for improved guidelines on managing parental expectations and ethical dilemmas in neonatal intensive care units.