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

We present four 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.