by Kate Reed
This week (14-20 May) is Dying Matters Awareness Week. And, it is currently estimated by the NHS that one in six pregnancies in the UK will, sadly, end in miscarriage. According to official data (PDF) 3,245 stillbirths and 1,381 neonatal deaths were recorded in 2014.
Post-mortem can often contribute to a better understanding of the underlying causes of death in such cases. But, in evidence submitted as part of a parliamentary debate on baby loss in 2016, low rates of consent for post-mortem were identified as a cause for concern.
Therefore, understanding how to support parents effectively around decision-making about post-mortem is important for reducing incidences of baby-loss.
The experience of baby-loss and the process of post-mortem is something we have sought to explore through an exhibition during the ESRC Festival of Social Science.
‘Remembering Baby: Life, Loss and Post-mortem‘ was a collaboration involving the University of Sheffield and a group of visual and sound artists. Handle with care is just one installation featuring in the exhibition; it involves 37 wooden memory-boxes each containing items relating to parent experiences and hospital processes.
The exhibition – which has already shown in London and Sheffield – has, so far, proved a novel way of illustrating the findings of an ESRC-funded project for which I am primary investigator. The research project focuses on exploring the emerging use of Magnetic Resonance Imaging (MRI) in early life loss (pre and neonatal death), examining the potential of the technology to transform parent and professional experiences of post-mortem.
Working with the project team, including co-investigator Dr Elspeth Whitby (radiologist and senior lecturer in medicine) and research associate Dr Julie Ellis (sociologist), the project has had two aims; firstly to understand how parents/families who have experienced baby-loss feel about, and experience, the (MRI) post-mortem process; and secondly explore the impact of this new technological application on professional practice, and relationships between professionals from different fields.
We took an ethnographic approach (a qualitative method where researchers observe and interact with a study’s participants in their real-life environment) to the research conducting observations and interviews with a range of professionals whose work informed the process of post-mortem. We also interviewed bereaved parents and other family members about their experiences of post-mortem.
We are currently in the final stages of data analysis and dissemination. Emerging findings emphasise some important issues in relation to the process of consent and role of MRI in the post-mortem process.
What parents told us about their experiences
Parents articulated concerns over what would happen to their baby during the examination; they often felt overwhelmed by information given to them and sometimes even felt discouraged from consenting to post-mortem. It was not uncommon for a bereaved parent to experience feelings of regret. As one mum states, ‘why didn’t we do it?’.
While there were a number of reasons why parents did not wish to consent to post-mortem, fear over the invasive nature of the examination did feature in parent accounts.
For example one father described the thought of a post-mortem as ‘pretty ghastly’.
We included the views of parents who had experienced different types of loss (miscarriage, stillbirth, sudden infant death syndrome – SIDS) as well as different types of post-mortem (including those who did not consent). While post-mortem using MRI had not been available to a number of parents in the study, most expressed an interest in this becoming more accessible in the future. This was a view readily shared by professionals especially in cases when parents did not wish to consent to full post-mortem.
For some parents (for example in cases of SIDS) post-mortem was not a choice but was ordered by the coroner. In these cases the care afforded to parents by various professionals was of paramount importance. As one mum stated about mortuary staff ‘they so obviously cared for our baby’.
What the initial findings are showing so far
Our research shows that a range of care practices demonstrated by professionals (such as dressing babies and talking or singing to them) are crucial to parents’ experience of the post-mortem process but are often hidden from public view. We felt therefore that it was particularly important to represent such practices in our exhibition.
One example of the way we did this was through a video entitled Matter of Fact which features different professional accounts of the post-mortem journey.
The exhibition has proved a particularly useful medium through which to engage parents, professionals and members of the public with the findings of the research, and we are currently working with different charities to travel the exhibition to other parts of the UK. We are also developing other ways to inform parent experience, professional training guidelines, and raise public awareness around post-mortem using a range of impact activities (from informing parent information sheets to conducting school outreach work).
By continuing to disseminate the findings of the research in this way we aim to challenge the silences that often exist around the heart-breaking experience of losing a baby, as well as shed light on the importance of post-mortem.
Dr Kate Reed is a Reader in medical sociology at the University of Sheffield. She is principal investigator of the ESRC-funded project ‘End of or Start of Life’? Visual Technology and the Transformation of Traditional Post-Mortem‘. Her research interests are focused in the area of reproductive health, prenatal genetics, gender, technology and health and social theory.