Lullaby Trust

BackgroundConsent rates for postmortem (PM) examination in the perinatal and paediatric setting have dropped significantly in the United Kingdom, the United States, and the Western Europe. We explored the factors that act as facilitators or barriers to consent and identified processes and practices that support parental decision‐making.MethodsA qualitative study conducted with bereaved parents, parent advocates, and health care professionals in the United Kingdom. Analysis was conducted on 439 free‐tect comments within a cross‐sectional survey, interviews with a subset of 20 survey respondents and 25 health professionals, and a focus group with five parent advocates.ResultsThree broad parental decision‐making groups were identified: 1, “Not open to postmortem examination”; 2, “Consent regardless of concerns”; and 3, “Initially undecided.” Decisional drivers that were particularly important for this “undecided” group were “the initial approach,” “adjustment and deliberation,” “detailed discussion about the procedure,” and “formal consent.” The way in which these were managed by health care staff significantly impacted whether those parents' consented to PM, particularly for those who are ambivalent about the procedure.ConclusionsWe propose a set of recommendations to improve the way PM counselling and consent is managed. Adopting such measures is likely to lead to improved family experience and more consistent and high‐quality discussion regarding PM.

# For debate {#article-title-2} The increased awareness of deliberate harm to infants by parents and carers has prompted debate on the terminology used for “cot deaths.” These two papers give historical context of the debate and consider whether the use of “sudden infant death syndrome” should be abandoned. # Time to put “cot death” to bed? {#article-title-3} In a recent editorial in the Journal of Clinical Pathology I argued that pathologists should approach sudden and unexpected death in the first year of life with greater caution than may have been applied in recent years.1 In consequence of the increased awareness of deliberate harm by parents and carers reported by Meadow and so graphically captured on video recordings by Southall and Banks,2–4 I said that the term “not ascertained” should be used much more widely than it is at present. I am fully aware of the distress that such an approach may cause to recently bereaved and totally innocent parents. I am also old enough to recall the “bad old days” of the 1960s, when deaths were wrongly attributed to unsuitable bedding or inappropriate care, leading to unnecessary inquests and pillorying of the parents in the local press. At the other end of the spectrum we used to invent meaningless diagnoses such as “acute interstitial pneumonitis” and “viral bronchiolitis.” Until late 1971 the registrar general would not accept the sudden infant death syndrome or any of its synonyms as a cause of death. This refusal had two undesirable consequences. Firstly, we had no idea of the true incidence of such deaths in the United Kingdom (or any other society) until reports such as that of Banks gave an indication of the size of the problem.5 Secondly, we focused our attention on an ever enlarging battery of laboratory investigations, rather than closely scrutinising the child's and the parents' histories, especially …

To investigate the effects of exposure to tobacco smoke and of parental consumption of alcohol and illegal drugs as risk factors for the sudden infant death syndrome after a national risk reduction campaign which included advice on prenatal and postnatal avoidance of tobacco smoke. Two year population based case-control study. Parental interviews were conducted for each infant who died and four controls matched for age and date of interview. Three regions in England with a total population of 17 million people. 195 babies who died and 780 matched controls. More index than control mothers (62.6% v 25.1%) smoked during pregnancy (multivariate odds ratio = 2.10; 95% confidence interval 1.24 to 3.54). Paternal smoking had an additional independent effect when other factors were controlled for (2.50; 1.48 to 4.22). The risk of death rose with increasing postnatal exposure to tobacco smoke, which had an additive effect among those also exposed to maternal smoking during pregnancy (2.93; 1.56 to 5.48). The population attributable risk was over 61%, which implies that the numbers of deaths from the syndrome could be reduced by almost two third if parents did not smoke. Alcohol use was higher among index than control mothers but was strongly correlated with smoking and on multivariate analysis was not found to have any additional independent effect. Illegal drug use was more common among the index parents, and paternal use of illegal drugs remained significant in the multivariate model (4.68; 1.56 to 14.05). This study confirms the increased risk of the sudden infant death syndrome associated with maternal smoking during pregnancy and shows evidence that household exposure to tobacco smoke has an independent additive effect. Parental drug misuse has an additional small but significant effect.