Special report: The Internet and End of Life

Special report: The Internet and End of Life

The Internet and End of Life

In June 2021 Demos published a report entitled The Internet and End of Life, which we commissioned from them.

Extensive research found that online spaces provide comfort, connection and community to people grieving, and people at the end of their life.

The Internet and End of Life sets out a vision with a number of recommendations to better integrate online platforms into support around the end of life after the pandemic.

Analysis of over 100k online posts

The research collected over 110,000 posts from public online forums where people were discussing issues relating to death, dying and end of life care.

It 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, to support others and be supported themselves.

Read The Internet and End of Life

Read The Internet and End of Life.

Cross-party think tank Demos also found that online spaces are providing valuable access to peer-to-peer support for people at the end of their life, enabling people to communicate with others who have similar experiences to their own. They enable people to speak relatively anonymously to other users, helping to alleviate loneliness, isolation and judgement.

As important as the emotional and practical support online is, the research also highlights that the current systems within health and care services around the end of life are not working for everyone. Some people feel disempowered, not listened to, and are struggling to navigate the system effectively.

Report recommendations

  • Health services and practitioners should continue to develop hybrid models of end of life support post-pandemic, including online, telephone and in-person support, to facilitate greater patient choice and access to a wider diversity of forms of support.
  • Government (including DCMS and DHSC) should invest in addressing the digital divide, and support both users and providers to better engage with online services.
  • Leading organisations providing support and care at the end of life, those providing online forums, and tech companies should work together with the NHS to create a shared database of online forums supporting people at the end of life, with details about who they are for and how to access them.
  • Organisations supporting people at the end of life should ensure there are options tailored to support specific communities at greater risk of exclusion from accessing online services – for instance, people who primarily speak languages other than English.
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