Description of the social and demographic characteristics of the respondent parents (N = 164) and their children (N = 139).

ICH: intracranial hemorrhage; NEC: necrotizing enterocolitis; cWMD: cystic white matter disease; IC: intensive care.*Patients were classified according to their clinical status at the time of the EOL DM: those who had no chance to survive despite Intensive care (IC); those who had a theoretical chance to survive with IC but had a very poor prognosis; and those who were not dependent on IC but had a hopeless prognosis and severe suffering (Verhagen, 2007).