Afraid to talk about death

Researchers at The Open University (OU) are opening up the conversation about death, discussing end of life and bereavement to enable people to make better decisions and support others.

Death is often deemed something too difficult to talk about – too morbid to bring up with loved ones and not dinner table conversation. But a lack of awareness about death and grief can have a negative impact. A team at The Open University is hoping to change this by increasing death awareness and ‘death literacy’ in the UK, so that people are more knowledgeable and better informed to make decisions around death.

The new BBC/OU co-production ‘Stacey Dooley: Inside the Undertakers’, released 9 November, focusses on what happens after a person dies, from mortuary visits to Dooley spending time with people who are funeral planning and grieving. The programme is centred around Dooley facing her own fear of death and learning how to encounter it and talk about it. And this is what researchers at the OU are looking to influence.

Professor Erica Borgstrom, Professor of Medical Anthropology, acted as an Academic Consultant for the programme, and she will be leading the Increasing Death Awareness & Literacy project at the OU. The project investigates why there is a lack of awareness about death and grief and the impacts this has, including the decisions people make about end of life care and funerals, the experiences individuals have of bereavement – including increased prolonged grief and lack of social support, and inadequate employer/organisational support for those who are experiencing terminal illness or bereavement, reducing people’s ability to work and/or study. Through the well-networked interdisciplinary group (Open Thanatology), the team plan to build on a collaborative programme of work that is aimed at improving the UK’s death literacy through education, research, and public engagement.

This is particularly important as the UK has an ageing population, meaning the death rate will increase over the coming decades. More people are going to die and be bereaved, with estimates suggesting that 5-9 people are significantly impacted when someone dies. Professor Borgstrom said: “Between being medicalised – meaning the majority of people are dying in hospital or dying whilst being managed through health and social care, or being professionalised with the assumption that talk therapy is needed to grieve, or being deemed an ‘individual’s private affair’, it is not surprising that people report not knowing how to think and talk about death, or even report being frightened of it. It’s important that we change this narrative in the UK to allow people to have open discussions, make better informed decisions and get the support they need whilst grieving."

Professor Borgstrom has posed two Challenges to the OU’s Open Societal Challenges Programme around realising better end of life care and about how people think and talk about death.

The Programme’s aim is to apply excellent research by OU academics to some of the most pressing challenges facing people across the UK and worldwide to transform lives and drive societal change.