Abstract

Objectives-To determine parents' views on autopsy after treatment withdrawal. Design-Face to face interviews with 59 sets of bereaved parents (108 individual parents) for whose 62 babies there had been discussion of treatment withdrawal. Results-All except one couple were asked for permission for postmortem examination; 38% refused. The main reasons for declining were concerns about disfigurement, a wish to have the child left in peace, and a feeling that an autopsy was unnecessary because the parents had no unanswered questions. The diagnosis, the age of the child, and the approach of the consultant appeared to influence consent rates. Of those who agreed to autopsies, 92% were given the results by the neonatologist concerned. Whether or not they had agreed to the procedure, at 13 months no parent expressed regrets about their decision. Conclusions-Autopsy rates in the East of Scotland stand at 62%. Parents' perceptions are an important element in consent to postmortem examination. (Arch Dis Child Fetal Neonatal Ed 2001;85:F4-F7)

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.

Objective-To explore parents' experiences of bereavement care after withdrawal of newborn intensive care. Design-Face to face interviews with 108 parents of 62 babies born over two calendar years in the East of Scotland. Results-Only 22% were seen by six weeks after the death, 10% were not recalled before 6-11 months, and 8% were not seen at all in the first year. All except one couple saw the neonatologist who had cared for their baby. Only 33% remembered a neonatal nurse being present. Most (88%) were seen in the study hospital. Parents highlighted a number of specific needs. Conclusions-Follow up care is a crucial part of the management of families from whose babies treatment has been withdrawn. Resources devoted to it should be re-examined to provide a service more in tune with parental need. In choosing the place, timing, and conduct of the meeting, staV should be sensitive to the expressed wishes of the parents themselves. (Arch Dis Child Fetal Neonatal Ed 2001;84:F125-F128)