To explore parents' perceptions of treatment withdrawal and the dying process.DESIGN
Face to face interviews with 59 sets of parents of 62 babies in the East of Scotland three months and 13 months after death.RESULTS
22% of the parents expressed reservations about the length of the dying process, which they reported in these instances had taken from three to 36 hours. Deaths that medical teams had predicted would be quick had, according to the parents' recollections, taken from 1.5 to 31 hours. When a baby died swiftly, this seemed to confirm the wisdom of the decision to stop. When babies lingered, doubts were raised.CONCLUSIONS
Parents need to be adequately prepared for what may happen after treatment withdrawal. The debate should be reopened about the best way to manage protracted deaths in line with parental need.