Deciding on treatment limitation for neonates: the parents' perspective

The reported study aimed to explore parents' perceptions of treatment withd rawal/withholding; their experience and their opinions. In-depth face-to-fa ce interviews at 3 and 13 months after the baby's death were conducted with 108 parents of 62 babies from the East of Scotland. Of the parents, 56% (6 0/180) believed they had decided to stop treatment. A further 4/59 sets of parents subsequently wished they had taken responsibility. Only one parent who did decide felt guilt 3 months after the event. Parents identified two essential factors which minimise doubt: full and honest information and con crete evidence of a poor prognosis. Conclusion The majority of parents wish to be active in decision making on behalf of their baby. Doing so does not appear to have adverse consequences . The pacing of events in the process of deciding and managing the dying is critical. Dissatisfaction is reduced if parents are given time and evidenc e to help them assimilate the reality at each stage.