Voices of the Dying
The Internet and End of Life
The mission of the Art of Dying Well at St Mary's University is to offer hope and companionship at the end of life by being close to the dying, those who care for the dying, and the bereaved. The mission of Demos is to bring the public into policymaking.
Our partnership was formed to listen to the voices of the dying, those who accompany the dying, and those who have been bereaved: to support a greater understanding of what those in the last stages of life, and those caring for them, need, and how this can best be provided, both online and offline.
For many, the end of life may be a time of uncertainty and loneliness, and online spaces provide an opportunity to find support. Here, people can share difficult emotions with others who understand their experiences, benefit from repositories of collective knowledge, and feel part of a community of solidarity.
The role played by online forums has grown since the onset of the Covid-19 pandemic, as suddenly people have been unable to access offline services or in person support, and organisations have shifted to providing services online. Even after the immediate crisis of the pandemic is past, it is likely that this shift towards digital communication and engagement will remain and so a greater understanding of the role online spaces can best play in supporting people at the end of life is crucial.
We collected over 110,000 posts from public online forums where people were discussing issues relating to death, dying and end of life care. Dating from 2003 to 2020, across 7 public forums and social media platforms, we identified five key themes emerging from people’s discussions in these spaces to explore further: • Grief: conversations centering around grief and bereavement • Care: people’s experiences of being carers or being cared for • Existential: discussion of existential beliefs about life and death • Online forums: discussion of the online forums themselves and the role that they play in people’s lives • Animals: conversations around grieving of, or the support offered by, pets.
We then analysed these to draw out insights about how people are using and relying on online spaces, before discussing the findings to inform our policy recommendations with policy experts and practitioners working to support people at the end of life or those who are grieving. We found that online spaces are supporting people in three key ways: providing comfort and validation from others going through similar experiences; enabling users to build their own capabilities, by building their understanding and access to information about end of life; and acting as a space where communities can develop, that people can come back to time and again to support others and be supported themselves.
“Our forum is like sitting down with a group of friends. We can gather, and open up to each other about what is in our hearts. We can listen to each other in our grief...Our ‘like’ button is a way to tell others they’ve been heard.” [bowdlerised]
Expert practitioner workshops were attended by representatives from Macmillan; Sue Ryder, Hospice UK, Anne Robson Trust, the Church, Grief Chat, St Christopher’s Hospice, Coordinate My Care, Child Bereavement UK, St Joseph’s Hospice, Arthritis UK, End of Life Doula UK, St Michael’s Hospice and St Francis Hospice.
Here’s a snapshot of what some participants shared:
“I think for me what was really highlighted is the need for there to be easy access to the forums of online groups and that information about these spaces should be held together somewhere as a recognised signposting centre for the bereaved. We have a lot of really valuable spaces and groups going on and the issue seems to be getting the word out about them.
The workshop was an ideal space to share thoughts and certainly the gathering of statistics was impressive giving me food for thought going forward with our projects at the hospice.”
“Key take aways for us were:
Policy workshops were attended by the Shadow Minister for Health and Social Care; the Chair of the APPG on Hospice and End of Life Care, Hospice UK, Parkinson’s, Macmillan, The Good Grief Trust, Secretariat for the APPG group on Housing and Care for Older People, the Parliamentary Under-Secretary of State for Digital Infrastructure, the Director of Public Health for Hertfordshire, an advisor to the Brunswick Group and a renowned author on end of life.
This highly original data (assembled in an ethical manner that entirely respects the privacy and confidentiality of those taking part in online forums) will be used to drive all aspects of our work; help to influence policy and shape practitioners support services as we begin to learn to live with Covid. It will also contribute to the national conversation about death and dying and with further funding lead to articles in the academic literature. The findings will also help shape additions and improvements to the Art of Dying training programmes; website and podcast content.
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