Author/Editor		Neubauer, D; Grosek, Š; Primožič, J
Title		Etične odločitve pri otroku z napredujočo nevrološko okvaro
Translated title		Ethical decisions in children with progressive neurological impairment
Type		članek
Source		Slov Pediatr
Vol. and No.		Letnik 5, št. Suppl 2
Publication year		1998
Volume		str. 42-6
Language		slo
Abstract		The authors introduce some views regarding ethical dilemmas in decisions on withdrawing/witholding intensive care treatment in children with severe or progressive neurological disease. Some different views are presented, those currently accepted in the United States of America and those which are the mainstream of the Slovenian Ethics Commission and were accepted also by the so-called Convention of Oviedo. The authors stress the relative ease of decision-making when dealing with cases of brain death or persistent vegetative state. However, decisions become much more complicated when definite diagnosis and long-term prognosis can not be reached. Instead of a discussion some cases are presented which were encountered during a long and successive collaboration between child neurologists and pediatricians in the intensive care unit. At the end the same diagnosis is presented in two different children, one taken from the literature and the other from personal experience. The final solution about terminating or withholding intensive care in a child with severe neurological disease cannot be set just on the basis of clinical experience and interview with the parents but should rather be judged individually. The small patients should not be viewed through their diagnoses, each case should be considered as a separate but complex individual entity.
Summary		Avtorji v uvodu predstavijo nekatera stališča do etičnih dilem pri odločanju o intenzivnem zdravljenju otrok s hudo ali napredovalo nevrološko boleznijo. Predstavijo nekatere poglede, ki jih zagovarjajo v Združenih državah Amerike, in sodobna stališča, ki jih zagovarja slovenska Komisija za medicinsko etiko in temeljijo na nedavno sprejeti oviedski konvenciji. Avtorji poudarijo, da je razmeroma preprosto odločati v primerih možganske smrti (smrti možganskih polobel ali možganskega debla) ali kroničnovegetativnega stanja, medtem ko postane sprejetje odločitve zapleteno, kadar ni mogoča diagnoza in/ali zanesljiva dolgoročna napoved. Namesto razprave predstavijo primere iz klinične prakse, ki so plod dolgoletnega sodelovanja otroških nevrologov in pediatrov-intenzivistov. Na koncu predstavijo primera enake bolezni z zelo različnim koncem, izbrana iz literature in iz lastnih izkušenj. Dokončne odločitve o prenehanju ali odtegnitvi intenzivnega zdravljenja ni mogoče sprejeti zgolj na osnovi strokovnega znanja in pogovorov s starši, temveč je treba vsak primer obravnavati posebej. Malih bolnikov ne smemo opredeljeti po diagnozi, ampak moramo vsakega od njih obrabnavati individualno.
Descriptors		DEVELOPMENTAL DISABILITIES NERVOUS SYSTEM DISEASES ETHICS, MEDICAL INTENSIVE CARE UNITS, PEDIATRIC CHILD DECISION MAKING