Necropsies in African children: consent dilemmas for parents and guardians

Abstract

Background-Necropsy examination provides a good index of the accuracy of clinical diagnosis and the quality of treatment, but its use in sub-Saharan Africa is limited. Aims-To identify the main reasons for parents'/guardians' refusal of consent for necropsy and to explore the issues aVecting their decision. Methods-A sequential necropsy study of Zambian children between 2 months and 15 years dying of respiratory disease. When the parent/guardian refused permission for necropsy, the main reason given was recorded, after encouragement to express their specific concerns in their own words. Results-Parents/guardians of 891 of 1181 children (75.4%) refused to give permission, and 290 (24.6%) consented. Of those who refused, 43% did so on the grounds that it would be a "waste of time," as the diagnosis should have been made in life and the findings would now be of no benefit to them. More than one quarter of those who refused did so because a death certificate had already been issued and arrangements to transport the body had been made and could not be delayed. Traditional beliefs that ancestral spirits forbade the mutilation of dead bodies were cited by 77 (8.6%). Other reasons included the child not being their own or that they must seek permission from other family members who were not available (6%). Religious beliefs were not a major cause of refusal. Conclusions-It is possible to achieve a rate of necropsy consent suYcient to undertake valuable clinical pathology studies on children in sub-Saharan Africa. The wide range of reasons cited for refusal points to the diverse and complex interaction of social and cultural factors aVecting attitudes to necropsy examination. Medical staV need training and support to improve the uptake of clinical pathology services.

Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study

“…While data from previous studies suggested low acceptability for CDAs [2,14,15], we hypothesized that acceptability of the MIA would be higher, and indeed the findings of this study revealed that the majority (over 70%) of the participants interviewed would be willing to know the CoD and would accept the MIA being performed on a relative if this was requested in a potentially real situation. Importantly, this was also the case for individuals who had recently experienced the death of a relative.…”

“…In these regions, the feasibility of routinely conducting the complete diagnostic autopsy (CDA), considered the gold standard methodology for cause of death (CoD) investigation, faces notable—and often insurmountable—barriers. These include, among others, the poor or non-existent acceptability of the typical and highly disfiguring CDA procedure, the lack of pathology expertise and infrastructure in low-resource regions, and the fact that in such settings the majority of deaths occur outside of formal health system premises [1,2]. The practice of the CDA is therefore restricted to research projects, forensic investigations for medico-legal purposes, and deaths reaching referral hospitals in the few countries that have functional pathology services capable of routinely performing autopsies [3–5].…”

Validity of a Minimally Invasive Autopsy for Cause of Death Determination in Adults in Mozambique: An Observational Study

“…Complete diagnostic autopsy (CDA), the gold standard method to determine the cause of death [1], is seldom performed in these countries due to limited human resources and cultural and/or religious backgrounds that negatively influence acceptance and consent in some regions [2,3]. In addition, many deaths occur outside the health system, which precludes not only postmortem evaluation but also frequently the basic medical assistance that allows certification of the death event.…”

Knowledge towards post-mortem examination and reasons for not specialising in morbid anatomy: study among medical undergraduate students

“…5 There has been a steady decline in the autopsy rate and decline in the rate of obtaining permission for autopsy as well, worldwide in recent decades and is matter of concern. 6 Fear of litigation, shortage of pathologists, concern about costs, failure to obtain consent from patient or relatives in spite of having substantial information about patients before their demise and knowledge of the medical professionals are some of identified reasons for this decline. [7][8][9] Various studies have been conducted to assess the attitude of deceased family members and medical professionals in order to identify factors related to such decline.…”