title: Reprint of "Ethical issues with artificial nutrition of children with degenerative brain diseases".
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)".
authors.affiliation: Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Electronic address: kohlschuetter@uke.uni-hamburg.de.
authors.forename: Alfried
authors.initials: A
authors.lastname: Kohlschütter
authors.affiliation: Service of Gastroenterology and Nutrition, Children's Hospital La Santísima Trinidad, Córdoba, Argentina. Electronic address: carolineriga@hotmail.com.
authors.forename: Carolina
authors.initials: C
authors.lastname: Riga
authors.affiliation: Service of Gastroenterology and Nutrition, Children's Hospital La Santísima Trinidad, Córdoba, Argentina. Electronic address: decrespo05@hotmail.com.
authors.forename: Dolores
authors.initials: D
authors.lastname: Crespo
authors.affiliation: Hospital Privado de Córdoba, Córdoba, Argentina. Electronic address: jtorres@hospitalprivadosa.com.ar.
authors.forename: José Manuel
authors.initials: JM
authors.lastname: Torres
authors.affiliation: Universidad Nacional de La Matanza, San Justo, Buenos Aires, Argentina. Electronic address: victorpenchas@gmail.com.
authors.forename: Victor
authors.initials: V
authors.lastname: Penchaszadeh
authors.affiliation: Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Electronic address: an.schulz@uke.uni-hamburg.de.
authors.forename: Angela
authors.initials: A
authors.lastname: Schulz
keywords: Childhood dementia; Inborn error of metabolism; Neurodegeneration; Vital support