When answers cannot be found in the textbook: Making ethical decisions regarding children with profound disabilities

Roie Tal, Gila Yakov, Avraham Lorber

Research output: Contribution to journalArticlepeer-review

Abstract

The article presents four cases of children with a major congenital heart disease as part of a serious debilitating congenital condition with an overall poor prognosis. These children were barely communicative or responsive, with profound mental and physical disabilities, and their life expectancy was limited. Managing treatment in such special patients requires not only a medical assessment but also ethical and practical considerations. An open, sincere discussion with the families has to take place in order to ascertain that they fully understand the children's condition and appreciate their wishes. Given the lack of ethical support in the Israeli healthcare system, we recommend setting up a multi-professional framework accompanied by ethical support that will assist the team handling the decision-making process in such complex situations.

Original languageEnglish
Article number101338
JournalProgress in Pediatric Cardiology
Volume61
DOIs
StatePublished - Jun 2021

Bibliographical note

Publisher Copyright:
© 2020 Elsevier B.V.

Keywords

  • Congenital heart disease
  • Decision making
  • Developmental delay
  • Medical ethics

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