Let's Talk About Dying

During the process of making Thrive, Zest had invaluable input from the Community Development team at St Barnabas Hospice, Lincolnshire. Their approach to helping communities talk about death and dying ensured our work was a true reflection of the grieving process. In this guest blog, Lisa Gibson, Community Development Manager at St Barnabas, talks about their work, their involvement in the Thrive process and why completing the sentence “Before I die I want to…” is important.

Every year over 500,000 children and young people in the UK experience bereavement. Few are prepared, few have friends who know how to support and too many go on to experience significant challenges throughout life.

In past generations, dying, death and bereavement were part of the social experience as communities rallied around those needing support. Since the 1950’s these experiences have been increasingly medicalised; causing communities to lose the skills and confidence that had been built over many generations. This has led to misunderstanding and the development of taboos that can leave the dying and the bereaved feeling isolated, lonely and poorly supported.

The key to breaking down taboos around dying, death and bereavement is to introduce them back into our social experience through every day conversation. The challenge is how to encourage people to talk about subjects that they find difficult. This is why we were so keen to be involved in the development of Zest Theatre’s production of Thrive when they were researching the show back in 2015.

The idea of a bucket list has been around for a long time but was popularised by a film of the same name in 2007. It came to our attention during Dying Matters Week, 2015 when we asked people to complete the sentence, “Before I die, I want to…..” Our experience, as we continue to pose this question, is that it polarises those who see it and think about living; and those who see it and think about dying.

Those who think about living often reflect on journeys they would like to make, people they would like to meet, things they want to discover and conversations they would like to start or finish.

Those who think about dying often struggle much more with completing the sentence as fear of death hangs over their thinking. This underpins our message: conversations about dying, death and bereavement can be difficult, but once these issues have been faced and discussed there is opportunity to put fear behind us and live life to the full.

At St Barnabas Hospice, our work around the dying matters agenda is all about helping people to have the conversations that are difficult because they are hugely significant. We want to support people to talk about dying, death and bereavement, no matter how difficult, so that that they can live life to the full without the shadow of fear or regret.

How would you complete the sentence, “Before I die, I want to……”? It might be something that can be achieved in the next week or it might take a huge effort but it does no harm to plan and to dream.

In Autumn 2016 we brought Thrive to Boston in Lincolnshire as part of Zest’s national tour. We invited four schools from the area to bring pupils because we think it’s really important that young people are equipped with the language and confidence to talk about dying, death and bereavement too. Over 2 days around 400 young people saw the production.

The stories of Ollie, Ashleigh and Raph spoke powerfully to young people in Boston and caused them to start asking some big questions around life and death that will help them to begin difficult conversations.

Thrive helped us to challenge some of the taboos and begin conversations. Following the performances we visited each school to unpack learning. In sixty minute workshops we looked at trauma, grief and post traumatic growth using the brilliant educational resource produced by Zest Theatre. It was clear from these sessions that many of the young people had identified with the characters and had begun to think about how they would react and cope in a similar situation.

Teachers told us that young people had come forward to ask for support with bereavement both anticipatory and following the death of a loved one. Many young people told us that Thrive totally exceeded their expectations, and that despite misgivings before arriving at the venue, they had enjoyed the performance immensely.

Each of the school groups were quite different and responded differently; some were very observational whilst others really got involved. During a particularly emotive scene, Luke Vernon, one of the cast members, found himself getting a hug from two members of the audience who were so moved by the performance that they felt it necessary to support the character. The self-elected level of participation made this performance very special and entirely memorable for each young person and member of staff that attended.

Our work with schools is just part of our plan to support communities to build resilience and reach a place where they are better able to support those with palliative and end of life care needs. We believe that achieving this ambition will be vitally important if we are to meet the challenges of the future. We were hugely grateful to those schools who engaged with this project and to the staff at Zest who were incredibly helpful throughout.

The challenge now is to keep the conversation going so that patients no longer tell us about truly painful experiences with lifelong friends who just don’t know what to say and so choose to avoid contact. I guess we have to accept that it will take time to change the culture of fear that has grown up around dying, death and bereavement. In the meantime, we may hang onto the hope that those young people in Boston who came along to Thrive will begin to effect change in their schools and communities as they sit alongside, listen with compassion and have brave conversations with friends and family members.

For more information please visit:

Dying Matters
www.dyingmatters.org

The Good Goodbye App (free download)
Apple App Store
Windows App Store
Google Play

The Thrive tour continues 21st February - 17th March 2017 with dates all over the country. Head to the Thrive page for tour dates, photos, videos, blogs and more.

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Lisa is the Community Development Manager at St Barnabas Hospice. Her work ensures that communities have the tools and confidence to care for friends, family members and neighbours who are living with and dying from life limiting conditions. Lisa works with communities to help them identify the skills that exist and develop the confidence to use them, safe in the knowledge that sometimes a cup of tea and a friendly chat can be just as therapeutic as a medical intervention.