Forgoing life-sustaining treatments How the decision is made in European Pediatric Intensive Care Units Results of Eurydice study - Juin 2002

Introduction
o    The decision to forgo life support is frequently made in PICUs.
o    In North American and European PICUs this decision is made for 30 to 58% of terminally ill children.
o    Few studies have reported empirical data on the decision-making process.

Three questions
o    How children die in European PICUs
o    What is the participation of the parents in the decision-making process
o    How the decision of foregoing life - support is applied

Methods
o    Multicenter, prospective study
o    Recording all deaths occuring from 02 to 06, 2002
o    One questionnaire recorded on-line for each death

Patients
Three independant groups according to the pattern of death
-    Group 1: children who died from CPR failure
-    Group 2 : children who died after a decision to end life support
-    Group 3: children who were brain death.

Participation
40 units from 15 European countries
o    France
o    Germany
o    The Netherlands
o    Belgium
o    Switzerland
o    Portugual
o    Sweden
o    Finland
o    Slovenia
o    Israel, Italia, Geerce
o    Spain
o    Yougoslavia
o    Tchechoslovakia

Patients
n = 353
o    Group 1 :     44.7 %
o    Group 2 :     21.8 %
o    Group 3 :     33. 4 %

Age
Neonates         38.5 %
Median             21 months

Causes of admission
o    Circulatory failure             48 %
o    Respiratory failure        62 %
o    Neurological failure        51 %

How the decision was taken
o    By a decision meeting                 84 %
o    Decision approved unanimously         81
o    Parents informed of the meeting         60
o    Decision written in the medical record         51
o    Decision discussed with the parents         62            

Relative contribution of the decision-makers

Interval decision - death
40 hours +/- 39

How do you call the decision ?

Parents presence during child 's death
o    Proposed to the parents        79 %
o    Parents present                       52 %

Conclusions
o    Death frequently follows a medical decision
o    The decision-making process consists of specific meeting
o    the main decision-makers are the seniors
o    Parents ' contribution in the process is ambiguous
o    Terminology is confusing