Ethical issues with artificial nutrition of children with degenerative brain diseases

• Published in: Biochimica et biophysica acta 2015-07, Vol.1852 (7), p.1253-1256
• Main Authors: Kohlschütter, Alfried, Riga, Carolina, Crespo, Dolores, Torres, José Manuel, Penchaszadeh, Victor, Schulz, Angela
• Format: Article
• Language: English
• Subjects: Child; Childhood dementia; Humans; Inborn error of metabolism; Neurodegeneration; Neuronal Ceroid-Lipofuscinoses - therapy; Nutritional Support - ethics; Nutritional Support - methods; Vital support
• ISSN: 0925-4439; 0006-3002; 1879-260X
• DOI: 10.1016/j.bbadis.2015.03.007

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)”. •Childhood dementia denotes loss of mental abilities in a previously healthy child.•Childhood dementia is associated with several genetic brain diseases.•Demented children may require artificial nutrition.•Decisions to start or stop artificial nutrition raise specific ethical questions.•Such decisions should be rationally and emotionally acceptable.