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Contributors: All authors took part in the design of the study. JR and CW designed the questionnaire, JR and TL conducted the survey, JR undertook the analysis, and all authors contributed to writing the paper. JR will act as guarantor for the paper.
To describe parents' experience and views of the postmortem examination after the loss of a baby.
Cross sectional survey.
Hospital with a dedicated bereavement counselling service, Newcastle upon Tyne.
258 women who had attended a bereavement counselling service at the Royal Victoria Infirmary, Newcastle upon Tyne, on at least one occasion after losing a baby during pregnancy or infancy, between October 1996 and October 2000.
Self completion postal questionnaire incorporating fixed choice and open ended questions.
Number of respondents who were asked if they would agree to a postmortem examination of their baby, and number who agreed to a postmortem examination; reasons for agreeing and not agreeing to a postmortem examination; quality of explanation received; number who regretted their decision to give or withhold consent for a postmortem examination.
166 (64%) respondents completed the questionnaire. Of these, 148 (89%) had been asked to agree to a postmortem examination on their baby and 120/148 of these respondents (81%) agreed, most of whom recognised benefits resulting from the examination. 101/117 (86%) respondents believed the findings had been explained appropriately. Nine (7%) of the 120 respondents who had agreed to a postmortem examination regretted their decision. Of the respondents who refused an examination, four (14%) had regrets about their decision.
Parents viewed the postmortem examination as a useful and necessary tool in helping to discover the reasons why their baby had died. Simplifying the language used to explain findings may further raise parents' understanding of the value of the postmortem examination and ensure that they are satisfied with it. Medical staff involved in consent for postmortem examinations should be fully trained in how to ask for parental consent, the postmortem examination procedure, and how to explain the findings.
Current literature relates mainly to health professionals' views of the postmortem examination
The perceived benefits of having a postmortem examination relate mainly to improving understanding of the circumstances leading to the death of the baby
Every family should be offered the opportunity for a postmortem examination
The benefits and limitations of the postmortem examination should be explained so that expectations of the outcome are appropriate
Medical concepts and terminology should be fully explained during follow up and families given the opportunity to ask questions at a later date if necessary
The uptake, quality, and value of postmortem examinations have been reviewed from the health professional's perspective,1–7 but literature on the family's views of the perinatal postmortem examination is limited. We asked mothers about their experiences and perceptions of the postmortem examination as part of an evaluation of a hospital based bereavement counselling service.8 The service is offered to all parents who have experienced a loss in pregnancy or infancy (including miscarriage or termination of pregnancy for antenatally diagnosed abnormality).
We sent a questionnaire to all mothers resident in the former Northern health region who had attended the bereavement service, in Newcastle upon Tyne, on at least one occasion after losing a baby during pregnancy or infancy, between October 1996 and October 2000. The questionnaire incorporated fixed choice and open ended questions and covered several issues relating to the postmortem examination, demography, and previous obstetric history.
Each woman who had attended was sent a letter, a questionnaire, and a prepaid envelope. All were free to accept or decline the invitation to participate. To maintain confidentiality, no names were written on the questionnaire, although each questionnaire was coded to enable validation of pregnancy outcome. We sent two reminder questionnaires to women who had not yet responded.
Fixed choice questions were analysed by using the statistical package SPSS. Analyses by outcome of pregnancy did not reveal any significant differences; these results are not presented. For some questions, more than one answer could be given.
A total of 258 mothers had attended the service. Of these, 166 (64%) completed the questionnaire (age range 17-48 years, mean 32.2 (SD 6.2) years); seven returned it uncompleted, and 18 were returned by the post office; there were 67 non-responders). Analysis is based on 166 questionnaires: among these women there were 33 (19%) miscarriages, 42 (25%) late terminations (16 weeks), 45 (27%) stillbirths, and 46 (27%) neonatal and post-neonatal deaths.
In all, 148 (89%) respondents said they had been asked to agree to a postmortem examination of their baby. Of these, 104 were asked by a doctor only, 18 by a midwife, four by the bereavement officer, and 12 by a doctor and at least one other health professional. The remaining seven subjects couldn't remember who had asked them. Five respondents did not answer this question; they felt it did not apply to them because their pregnancies had resulted either in a miscarriage or a termination. Of the other 13 respondents who said they had not been asked, one regretted this because she wanted more information about the cause of death, to inform future pregnancies.
One hundred and twenty respondents (120/148, 81%) agreed to a postmortem examination; reasons for agreeing are summarised in table table1.1.
One hundred and seventeen respondents (97% of mothers agreeing) were later told the findings; 101 (86%) believed that the findings were explained appropriately and 110 (94%) said they were given sufficient time to ask questions. Table Table22 shows the responses from parents who did not believe that the findings had been appropriately explained. Respondents' views on how the findings of the postmortem examination were explained are shown on bmj.com.
Table Table33 summarises the perceived benefits of consenting to a postmortem examination. The most common stated benefit was that it helped to explain what had happened to the baby (see bmj.com for parents' comments). However, nine respondents of the 120 agreeing (7%) who had given consent regretted their decision. Seven gave reasons: four felt guilty because the examination had not found anything conclusive, one thought that it had produced more questions than answers, and two respondents felt their baby had gone through enough. A further three had mixed feelings about whether they regretted giving consent.
Twenty eight respondents did not agree to a postmortem examination. The most common reason given, out of a choice of five (see table table4),4), was that they felt their baby had suffered enough.
Four respondents said they regretted not having the information that the postmortem examination may have provided. One said: “Now, two years later, I would like to know why they died,” and another: “an answer may have alleviated the burden of guilt.”
During the time of this study, the late fetal and neonatal postmortem examination rate in the Northern region was 60%.9 The high postmortem examination rate among respondents reflects, in part, the high proportion of miscarriages and termination of pregnancies for fetal malformation—postmortem examination rates in these groups are generally high.
The perceived benefits of the respondents' agreeing to a postmortem examination for their baby related largely (as expected) to an improved understanding of the circumstances that led to their baby's death and a recognition that this information could be helpful in determining possible implications for future pregnancies. However, many hoped that medical knowledge might be advanced—a finding noted previously.10,11
Thirteen comments stated that the findings had helped them come to terms with their loss, removing feelings of guilt by reassuring them that the reasons for proceeding to termination were well founded, or that the baby's problems could not be attributed to their actions. Beckwith concludes that one of the most positive roles of the postmortem examination is “to help alleviate the myriad of false apprehensions on the part of the family.”12 These observations illustrate that families may benefit in ways not foreseen by health professionals and that they should always be asked whether they would like their baby to have a postmortem examination. Other responses indicate that families are not advised appropriately after their baby's death. Of nine who regretted giving consent, four gave as their reason the fact that no “cause” of death had been found—an outcome for which they should have been prepared. Thirteen comments from those refusing consent believed that they would not be helped by the examination. In a recent study by McHaffie and colleagues, no parent regretted their decision to agree (62%) or not agree (38%) to a postmortem examination.11 This difference may reflect appropriate counselling of parents when health professionals were obtaining consent.
For respondents who did not believe that the findings had been adequately explained, confusion over the explanations offered or use of medical terminology were the most commonly stated reasons. This indicates the importance of interpreting such terminology, explaining medical concepts, and giving the opportunity for families to ask further questions at a later date. Also, the pathologist could be involved more frequently in providing feedback and at the consent stage.
We acknowledge that this is a study of a selected sample of women attending a tertiary centre with a dedicated bereavement counselling service, and therefore the views expressed may not be wholly representative of all women suffering a loss. However, the study is particularly relevant in the light of the chief medical officer's recent interim guidance on postmortem examination,13 and it confirms the need for all those working in the field to be trained in how to ask for parental consent, the postmortem examination procedure, and how to explain the findings.
We thank all the respondents for taking the time to complete the questionnaire and to Pat Barkes for secretarial support.
Funding: JR is funded by the NHS Executive (Northern & Yorkshire).
Competing interests: None declared.
Comments from parents in this study can be found on bmj.com