[Family participation in the decision making process for life support limitation: paternalism, beneficence and omission]

Abstract

Background and objectives: To analyze and discuss the medical aspects related to the family involvement in the decision making process regarding end of life care to children admitted to the pediatric intensive care unit (PICU).

Contents: The authors selected articles on end-of-life care published during the last years searching the PubMed, MedLine and LILACS database, with special interest on studies of death conducted in pediatric intensive care units in Brazil, Latin America, Europe and North America, using the following keywords: death, bioethics, PICU, decision-making, terminal care, parents interview and life support limitation (LSL).

Conclusions: Several studies have demonstrated the relevance of the family participation in the decision making process regarding LSL. In our region the family participation in this process is not stimulated and valued, ranging from 20%-55%. The authors present a practical sequence for discussing and defining LSL with the families. Despite of the family participation in the decision making process for LSL be legally, morally and ethically accepted in developed countries, this approach is adopted in a very few cases in our region. To explain this difficulty observed among the Brazilian pediatric intensivist, some studies should be conducted in our region.