ABSTRACT
The decision having been made to redirect care away from intensive therapy and towards compassionate care, priorities and needs change. Death is now the expected outcome, and efforts are focused on ensuring dignity and reducing distress to a minimum. Only three families in the authors' study had no opportunity to be involved in the dying process, in all cases because the child had died before the parents arrived in the Unit. Although for most the opportunities included activities before withdrawal and death as well as afterwards, these parents were limited to doing things with the child only after death. One of these couples received a telephone call in the middle of the night telling them that the baby's condition had worsened. They were five minutes too late to see their son alive, and they expressed a sense of guilt that they had not been with him when he died.
