What if good experiences of death were a social justice issue?

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“Hospices have removed death and dying from communities and it is our responsibility to put it back in the heart of the community.”
– Hospice Leader

Everyone will die in the end, it is the one certainty in life. However, many in our society have become uncomfortable talking about death. We have medicalised the process of dying and repurposed beautiful buildings (hospices) which hide it from view. This has created inequalities in the way people experience death and bereavement and removed our ability to have open, honest conversations. Is it time to make death everybody’s business again?

Sparking open and honest conversation

St Christopher’sMarie Curie and Nesta have been working together to understand what has changed in experiences of dying, death and bereavement during the COVID-19 pandemic and how learning from the crisis could help reshape these experiences.

We began by gathering a mix of perspectives and experiences through interviews with 52 people. We then created a virtual space for 150 people from a diverse range of backgrounds to come together to have open, honest conversations about what we had heard so far, build a picture of what future experiences of dying death and bereavement could look like and start thinking about how we can work together to achieve this.

What we have heard so far

“COVID has shown the system can change at pace – this demonstrates an opportunity.”
– Clinical Lead
Our Insights Summary lays out what we have heard so far.

Alongside the huge challenges and trauma that it has brought, the pandemic has also acted as a catalyst for significant change and innovation. Here are some key findings:

We need to normalise talking about death

  • The crisis has shone a light on existing disparities in care and the need for equitable, person-centred and holistic support to be accessible to all.
  • As a society, we struggle to have meaningful conversations about dying and death. COVID-19 heightened awareness of death, however, there is more work to do to shift the dialogue and culture around dying, death and bereavement.
  • Innovative models of community-led support existed on the margins and grew rapidly through the initial COVID response. Citizens mobilised quickly during lockdown, demonstrating they have the energy and skills to provide vital support locally.
  • Before the crisis, trust and collaboration was hampered by the policy and funding environment. The crisis temporarily removed some of these obstacles and cross-organisational collaboration thrived with resources and knowledge able to flow more freely.
  • Promising tools and technology were emerging pre-COVID, but not everyone was able to access or use them. A forced shift to virtual working enabled staff to connect, grow their digital confidence and meet increasing demand, however, in some cases this also further marginalised some groups.

The time for change is now

What has really struck us, is the energy, appetite and opportunity for change. A network of people with diverse perspectives and experiences is building, all asking the same question: how do we do things differently so that every person has a better experience of dying, death and bereavement?

If you are asking yourself the same question, then please do join the conversation:

  • Connect on Twitter to explore and interrogate these insights, share your stories and offer your views on what needs to happen next via #BetterEndOfLife
  • Register your interest to hear about future events and opportunities to connect by signing up
  • Join the dots by connecting the network to great work you know is happening already, e.g. the Hospice UK Future Vision Programme and the NHSE Palliative and End of Life Care Programme
  • Bring others on board by sharing these insights or starting a conversation with those who can help us question the way things are done and bring a fresh perspective

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