Deciding on treatment limitation for neonates: the parents' perspective

The reported study aimed to explore parents' perceptions of treatment withdrawal/withholding; their experience and their opinions. In-depth face-to-face 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% (60/180) 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 concrete evidence of a poor prognosis.

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 evidence to help them assimilate the reality at each stage.