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Perinatal postmortems: professionals, parents, and clinical trials

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Attitudes towards perinatal postmortem examinations (PMs), especially in the context of clinical trials, have been explored in a series of articles.

There is concern about falling PM rates both in general and in perinatal pathology. Perinatal PMs are seen as having particular advantages in that they might provide genetic information for parents and by clarifying the cause of death might also provide ‘closure’. They are also useful for audit and research. When babies in clinical trials die, asking for consent for PM may be seen as more difficult because it might be interpreted as being of benefit only to the trial rather than to the parents. Added to that the whole subject of consent for perinatal PM has become more complex in the wake of UK controversies about organ retention and about consent in perinatal trials. Researchers in London and Cambridge, UK have analysed the views expressed by neonatologists, pathologists, and parents who participated in one or both of two neonatal trials, one of nitric oxide against standard care and one comparing two surfactant preparations.

Twenty six neonatologists (ages 30–54 (mean 37 years), 23 men, 11 consultant grade) participated in semistructured, tape recorded interviews. Many of them expressed a feeling of conflict between their duty of care to the parents and their responsibility to the trial. Less senior neonatologists in particular tended to be less aware of the pathology aspects of the trial and to feel that PM had little to offer. Some neonatologists, however, regarded their responsibilities to the trial and to parents as of equal importance and felt little sense of conflict. A few worried that participation in the trial might lead them to apply pressure to reluctant parents and some resolved the dilemma by giving priority to parental feelings and withdrawing immediately if they detected resistance. Asking parents to consent to PM because the research might benefit others was looked on by some as emotional blackmail and the suggestion that PM might be necessary to monitor for possible harm could raise questions in the parents’ minds about the safety of the trial. The detailed nature of present PM consent forms could on the one hand increase family distress and on the other hand make their decisions clearer and more informed. Five pathologists expressed their views in writing or by telephone. They expressed concern about the state of perinatal pathology and the sharp fall in the number of PMs. They agreed about the importance of PM studies within clinical trials and thought that clinicians should try to persuade parents of that importance.

In a separate study 10 interviews were conducted with 16 parents of 12 babies who had died during one or other of the two randomised controlled trials. The parents of five of the babies had agreed to PM. None of the parents criticised the manner in which consent for PM had been sought and none had felt pressurised. While some found a PM too much to accept, others wanted one both to provide information for themselves and because of the possibility that the knowledge gained might help others.

In a commentary a pathologist describes a system in which deaths in clinical trials are often referred to the coroner. The issue of PM is raised with parents by the neonatologists but the pathologist discusses the details of the procedure with the family before it is carried out.

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