'End Of' or 'Start Of' life? Visual Technology and The Transformation of Traditional Post-Mortem

The loss of a baby remains a taboo subject, although it’s something many parents experience. In 2016 more than 5,500 babies in the UK were recorded as stillborn or died shortly after birth.

Post-mortems can provide important information for bereaved parents about the cause of death, as well as crucial knowledge for medical research. However, consent rates among parents remain low.

Professor Kate Reed, Dr Elspeth Whitby (University of Sheffield) and Dr Julie Ellis (University of Huddersfield) explored the role of the post-mortem and minimally invasive post-mortem examinations using Magnetic Resonance Imaging (MRI).

Innovative ethnographic approach

Using an innovative ethnographic approach, the team pioneered the use of 'go-along ethnography' to follow hospital staff in their day-to-day work, combined with interviews of bereaved parents and other family members.

Their research found that hospital staff often felt inadequately trained in bereavement situations and gaining parents' consent for post-mortem examinations was problematic.

While parents felt overwhelmed by information and concerned over what would happen to their baby during a post-mortem – particularly about how invasive the examination would be.

The research revealed 'hidden' care practices that take place in the mortuary such as bathing, dressing and talking to babies were a key part of parents' experience of the post-mortem process.

“The professionals sing to the babies, they talk to the babies, they care for them during the process; that’s been an important finding and it’s something that parents really appreciate,” Kate says.

These insights have been used to provide better information to parents about the post-mortem examination at Sheffield Teaching Hospitals NHS Foundation Trust, which now includes details of the personal care that hospital staff give to babies. As a result, take up of examinations is increasing in Sheffield.

The research team also collaborated with artists and graphic designers to create the 'Remembering Baby' exhibition which was held in London, Sheffield, Gateshead and Nottingham.

The exhibition was built around the way that technology, in this scenario, was challenging the boundaries around life and death; technology that provides both parents and healthcare professionals with a greater understanding of a misunderstood issue: stillbirth.

Unfortunately, Kate says, many parents are reluctant to consent to a post-mortem in this context because they’re uneasy about what happens to their child in the mortuary.

“Parents find out all the kind of diagnostic and medical information about what a post-mortem might tell them,” Kate says, “but the things that parents often worry about is: who’s going to look after my baby? Where’s my baby going to go? What’s going to happen to them?” She adds.

Kate explains that there is a societal view of mortuaries being “really dark places,” but one of the things that the research has uncovered – which has been represented in the Remembering Baby exhibit – is the tender care practices inside mortuaries.

Bereavement workshops

Creative bereavement support workshops were run as part of the exhibition and are currently being adopted by NHS Trusts and national bereavement support charities across the UK.

Award winning research

In July 2019, Kate Reed became the winner of the Outstanding Societal Impact award in the ESRC Celebrating Impact Prize 2019, along with colleagues Dr Elspeth Whitby and Dr Julie Ellis for the research into infant post-mortems. The Impact Prize 2019 was presented at a ceremony at the Royal Society in London. The research team also receive £10,000 to spend on further knowledge exchange, public engagement and other impact activities.

Kate said:  “We're honoured to receive this award. I want to highlight the value and importance of interdisciplinary and collaborative research. I've learnt so much from working with Elspeth, who's a clinician, and engaging the social sciences with medicine and the arts and humanities.

“We want to thank the NHS staff who have been involved with this project, the ESRC for funding this sensitive research, and the Faculty of Social Sciences who have supported this project right from the beginning. I also want to thank the charities and artists that have worked with us and made this the project that it is.

“And finally and most importantly, I want to thank the parents that have been involved. We've learnt so much and it's completely changed the way I practice social science and do qualitative research. This award is for all those babies whose lives may have ended prematurely but will always be remembered and will never be forgotten.”

Professor Craig Watkins, Vice-President and Head of the Faculty of Social Sciences, said: “I am absolutely delighted that the ESRC have recognised the outstanding achievements of Professor Kate Reed and colleagues with the Impact Prize 2019. It is a fantastic example of what can be achieved when we work collaboratively and across disciplines.

“Their research has not only informed and changed practice in hospitals across the UK, but has provided a source of support and comfort for bereaved parents at an incredibly difficult time.”

A national service

Kate wants to see a way to roll out MRI post-mortems “as a kind of national service,” because they’re less invasive than traditional post-mortem techniques and, above all, are something that parents really value; making them more likely to consent to an MRI in the first place.

Kate says: “Post-mortems don’t always give answers, but one of the things that we found with the project was that it’s not just about giving individual parents answers, it helps with medical training, it helps with scientific knowledge, and development by having that kind of information. We don’t know about disease unless we do these things.”