Ethical issues with artificial nutrition of children with degenerative brain diseases

Biochimica Et Biophysica Acta
Alfried KohlschütterAngela Schulz

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)".

References

Aug 19, 1995·BMJ : British Medical Journal·R E Cranford
Oct 5, 2011·Palliative Medicine·Natasja J H RaijmakersAgnes van der Heide
Nov 8, 2011·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·Sarah Cohen-GogoLaurence Brugières
Jul 25, 2012·Critical Care Medicine·Vanessa N MadrigalChris Feudtner
Apr 23, 2013·Biochimica Et Biophysica Acta·Angela SchulzRuth Williams
Jul 5, 2013·Journal of Medical Ethics·Rosalind J McDougall, Lauren Notini

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