Related Experiment Video
Updated: Apr 10, 2026
Conditional Reprogramming of Pediatric Human Esophageal Epithelial Cells for Use in Tissue Engineering and Disease Investigation
Published on: March 22, 2017
Reprint of "Ethical issues with artificial nutrition of children with degenerative brain diseases"
Alfried Kohlschütter1, Carolina Riga2, Dolores Crespo2
1Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Insights
Ethical decisions regarding artificial nutrition for children with neuronal ceroid lipofuscinoses (NCL) require informed parental consent. Careful dialogue between families and professionals ensures these complex choices are made acceptably.
Area of Science:
- Pediatric Neurology
- Bioethics
- Neurodegenerative Diseases
Background:
- Neuronal ceroid lipofuscinoses (NCL), also known as Batten Disease, are a group of rare, inherited neurodegenerative disorders.
- Children with advanced NCL often lose the ability to communicate and may require artificial nutrition.
- Ethical considerations surrounding artificial nutrition in these vulnerable patients are complex, particularly regarding decision-making for non-communicative individuals.
Purpose of the Study:
- To explore ethical viewpoints on artificial nutrition for children with degenerative brain diseases, specifically NCL.
- To discuss the best interests of patients unable to communicate their desires.
- To outline criteria for informed decision-making regarding artificial nutrition.
Main Methods:
- Discussion of author viewpoints and audience comments from a workshop at the 14th International Congress on NCL.
- Analysis of ethical considerations in pediatric neurodegenerative disease management.
- Development of a checklist to guide decision-making processes.
Main Results:
- Consensus exists that parents/representatives, adequately prepared intellectually and emotionally, should make decisions about withholding, instituting, or stopping artificial nutrition.
- Decisions regarding artificial nutrition are highly individualized.
- Rational and emotionally acceptable decisions can be achieved through prolonged dialogue between families and healthcare professionals.
Conclusions:
- Informed parental decision-making is crucial for artificial nutrition in children with advanced NCL.
- A structured dialogue process supports families in making difficult ethical choices.
- Checklists can aid in systematically addressing key considerations for artificial nutrition.
Abstract:
This report highlights viewpoints of the authors and comments from the auditory at a workshop, held during the 14th international Congress on neuronal ceroid lipofuscinoses (NCL) in Córdoba, Argentina, on ethical aspects of artificial nutrition in children with degenerative brain diseases. The discussion centers on what constitutes the best interest of a patient whose personality was immature before the onset of the disease, who has become demented during its course and is unable to communicate his/her own positions and desires. There is wide consensus that in a child with advanced disease who cannot be fed naturally, decisions to withhold nutrition or to institute or stop artificial nutrition, should only be made by parents (or their representatives) who are adequately prepared on an intellectual and emotional level. We try to show that such decisions are highly individual but can be made in a rationally and emotionally acceptable way after a careful and prolonged dialogue between families and professionals. A checklist summarizes important considerations. This article is part of a Special Issue entitled: "Current Research on the Neuronal Ceroid Lipofuscinoses (Batten Disease)".
More Related Videos
Related Concept Videos
01:27Ethical Issues
Ethical Concerns in Healthcare:
01:27Nursing Ethical Principles II
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
01:15Enteral Nutrition II: Nasointestinal and Gastrostomy Feeding
Nasointestinal Feeding
Nasointestinal feeding involves placing a tube...
01:17Ethical Dilemmas I
Let us explore some examples to understand the potentially complex moral decisions nurses face.
Take the case of caring for minors, particularly in areas related to reproductive...
01:27Parentral Nutrition: Centeral and Peripheral Parental Nutrition
PN can be administered through two primary routes:
1. Central Parenteral Nutrition (CPN):
CPN involves delivering a high concentration of nutrients through a large vein. This is typically achieved using a Peripherally Inserted Central Catheter (PICC) or,...
01:26Enteral Nutrition I: Orogastric and Nasogastric Feeding
Orogastric (OG) and nasogastric (NG) feeding are two standard methods used for enteral nutrition. Enteral nutrition is often preferred over...