Presented at the Neonatal Society 2010 Spring Meeting.
Armstrong L1, Laing I1, Smith C1, Evans M2, Stenson B1
1 Simpson Centre for Reproductive Health, Edinburgh Royal Infirmary, Edinburgh, UK
2 Department of Pathology, Edinburgh Royal Infirmary, Edinburgh, UK
Background: Little is known about the factors which influence parents’ decision of whether or not to consent to perinatal post mortem, and about how they perceive the subsequent process.
Aim: To learn from bereaved parents about how they perceived the process of perinatal post mortem.
Methods: A questionnaire was developed with help from the Stillbirth and Neonatal Death Society (SANDS Lothian) and posted to parents whose infants died in Edinburgh Royal Infirmary between Jan 1998 and Feb 2008. Parents were included if their infant was freshly stillborn at > 24 weeks or suffered neonatal death. Procurator Fiscal cases were excluded. The study was carried out with full approval of the Lothian Regional Ethics Committee.
Results: Questionnaires were sent to 146 parents and 41 were returned (28%), 27 of whom had consented to post mortem.
Before discussion, the majority of parents (60%) felt they would not consent to post mortem. Of those who did consent, 46% had initially thought they would not do so. When asked about the reasons for their decisions, more of the parents who consented felt that the discussion about post mortem had been dealt with in a sensitive manner compared with those who declined. They also reported a better understanding of how post mortems are done.
The vast majority of those who declined post mortem felt they had made this decision before discussion. 85% felt that they already knew what the cause of death was, 58% said they were too upset to think about it, and 71% felt that their baby had gone through enough already.
96 % of parents who consented to post mortem attended follow-up compared with 50% of those who declined. In 52% cases post mortem findings were unexpected. In 82% the explanation of the post mortem was perceived as helpful. Overall the majority (86%) of people felt they made the right decision.
9% of respondents would like a pathologist to be present during discussions, and 18% would like the pathologist to attend the follow-up appointment.
Conclusion: Before discussion about post mortem most parents felt they would decline consent. However parents commonly change their minds in favour of consent and this decision may be associated with a more positive perception about the discussion, and a better knowledge of the process. Most feel later that they made the right decision. Some parents would favour the presence of a pathologist at the time of the discussion and or during follow-up.