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Before I Die: death positivity and the community nursing contribution

02 December 2021
Volume 26 · Issue 12


This article explores the contextual backdrop of the death-positive movement that inspired the discussion group Before I Die: Worcestershire, along with the motivations behind its creation. It explores the balance between practical, planning discussions and open-ended talks held by the group, emphasising the importance of creativity when responding to the topics of death and dying. The collaborative efforts between Before I Die: Worcestershire and other groups and persons involved in the death-positive movement are also highlighted. This article considers the potential of grassroots community movements to engage people to make plans for their dying, regardless of circumstances and background. It argues that death-positive movements, projects and initiatives can be a valuable way for community nurses to engage with the population they serve.

In recent years, death-positive groups, such as The Order of the Good Death (2021), pioneered in the US by Caitlin Doughty, and the UK's Dying Matters (Hospice UK, 2021) and A Positive Death (2021), have made it their mission to begin national conversations about death and dying. Continuing the themes explored in Ernest Becker's 1973 Pulitzer Prize-winning anthropological work, The Denial of Death, the death-positive movement aims to inspire frank and honest exchanges about death and dying that are inclusive, regardless of the religious, ethnic, gender or sexual identities of the participants. This is so that the culture of silence that exists around death might be broken.

The death-positive movement has also given rise to more open discussions about death in the general media—for example, the podcast Griefcast, hosted by Cariad Lloyd, and the annual Good Grief festival (2021), a virtual festival exploring the themes of love and loss. This is underpinned in academia by the work of John Troyer at the Centre for Death and Society (University of Bath, 2021).

Before I Die: Worcestershire, a group bringing people together to talk, share and promote thoughts, facts and ideas in relation to the inevitability of death, was formed in 2017 and exists in the context of the death-positive movement out-lined above. It was directly inspired by Brum YODO, a death-positive group active in Birmingham, and by the concept of death cafes, which were founded by Jon Underwood to provide an informal opportunity for discussion around death.

What is Before I Die: Worcestershire?

The founders and core working group of Before I Die: Worcestershire are a variety of professionals: a GP, a nurse, an arts leader and an end-of-life doula. Their goal was to enable positive communal conversations about death and dying. Ultimately, they believe that speaking openly about death and dying engenders a feeling of celebration about life; in talking about death, we might appreciate life more. The underlying principle of Before I Die: Worcestershire was to combine expertise from both the medical and creative spheres, allowing the specific approaches allied to each discipline to mix and inform the other, to encourage all aspects of death and dying to be explored. Working in this collaborative way, the primary intention is to engage members of the public and inspire and empower them to talk openly, be informed, make plans and respond creatively to the prospect of death and dying.

A variety of events was intended, rather than adherence to a specific model, such as in the death cafe movement, so that sessions would change and grow and, ultimately, be responsive to the needs and interests of the public. However, certain markers were established: Before I Die: Worcestershire aims to run a minimum of four events each year, as well as celebrating Dying Matters Awareness Week and supporting and collaborating with the local hospice. It was also important that Before I Die: Worcestershire events were open to all, so venues were identified that were accessible and close to bus routes and the local train station.

Before I Die—let's talk about it

Before each session, specific ground rules, mandating respectful listening and sensitivity, are outlined and made clear. There is always the possibility that the topics covered during these sessions may be emotional or potentially triggering; therefore, the option of attendees speaking to one of the group's core members on a one-to-one basis if they are finding the subject matter challenging is made available, with the option of signposting to supportive services. Similarly, Before I Die: Worcestershire does not enter into discussions about euthanasia or assisted dying, nor does the group focus on the post-death issues of grief and bereavement, as there are other recognised and established resources that cater to these issues.

Once these ground rules are established, the intention is that conversation and interaction is wide-ranging and open, sometimes touching on practices around death and dying that might be considered taboo, precisely because the terms of the conversation have been clearly set and maintained. Coming to a Before I Die: Worcestershire event might be provocative, due to the nature of the topics discussed, but the atmosphere is warm, welcoming and inclusive. The sessions are organised into either a conversational-style event, where an initial general discussion can then break into smaller groups, with an opportunity for feedback at the end, or a panel of invited ‘death experts’ are made available in more of a Q&A format. Before I Die: Worcestershire has obtained some amazing experts for these panel discussions, such as funeral directors, who have shared the intricacies of their trade, and faith leaders, who have detailed the beliefs, practices and rituals surrounding death for their specific religion.

Before I Die—let's make some plans

Alongside hosting discussions, Before I Die: Worcestershire also designs and runs an ongoing series of informative planning workshops with practical applications. When the group first started, it was clear that attendees wanted different things. Some just wanted a free-flowing discussion, which was catered for by the ‘Let's talk about it’ sessions outlined above. Others wanted a more concrete practical offer, which the group addressed with the ‘Let's make some plans’ workshops. These advance care planning workshops brought together groups of up to 16 people, and covered legal aspects of capacity and the Mental Capacity Act 2005, as well as introducing the processes around creating Powers of Attorney and Advance Directives to Refuse Treatment. Similarly, one-off, subject-specific meetings for both the general public and professionals, covering topics such as digital legacy, have been hosted. As part of Dying Matters Awareness Week, guest speakers are invited to these sessions to explore a new or emerging aspect of death and dying or an innovative approach to an existing convention. The Digital Legacy Workshop introduced people to the complexities of handling personal online information and assets after death and how to grant authority to update or close social media accounts if desired. In our digital world, this kind of knowledge is becoming essential.

Before I Die and Dying Matters Awareness Week

Creativity is a huge part of Before I Die: Worcestershire. For those core members with an arts background, making diverse and creative works in response to death discussions is important, sitting within a long tradition of mortality being both an inspiration and a motivation for artists and writers, touching on aspects of transience, humanity and legacy. In engaging the general public during free drop-in sessions, run as part of Dying Matters Awareness Week, the topic of death and dying can be interacted with in a more accessible manner through crafting activities. People generally seem more open to engaging with challenging concepts if they are working with their hands; conversation flows, and people open up if they are being creative or feel enabled and inspired to make a free artistic response. Activities run by Before I Die: Worcestershire offer a ‘fascination trap’, in which materials are attractively presented and all the senses are engaged. Similarly, people are invited to engage at their own level in a space where they feel safe, without judgement or interrogation of their response. It should always be remembered that responding creatively and speaking freely about death might both be alien to the general public; however, Before I Die: Worcestershire aims to enable both, with the ultimate goal of celebrating the experience of being alive.

Before I Die and collaboration

Collaboration between those from a medical background and those working in the arts is another touchstone of Before I Die: Worcestershire. The group were absolutely delighted to welcome the author and palliative care consultant Kathryn Mannix to Worcester in 2019 for an extremely well-attended Q&A session, following the publication of her book With the End in Mind: How to Live and Die Well (Mannix, 2017). In 2020, the group collaborated with the Vamos Theatre Company, who created an extraordinary piece of masked theatre entitled Dead Good. Unfortunately, while touring the country to rave reviews, the COVID-19 pandemic struck, meaning that the tour had to be cancelled. However, we understand that the play is to be relaunched in February 2022.

Before I Die: Worcestershire in the context of COVID-19

Understandably, the group ceased operations during the initial waves of the COVID-19 pandemic. It did not feel comfortable to talk about preparing for a good death at a time when death was ever-present, striking at a time when people were least prepared and were unable to even have loved ones by their side during their final illness. However, the group did host a one-off ‘Let's talk about it’ session on Zoom in November 2020 to touch base with attendees.

As life begins to return to some sort of normality, the Before I Die: Worcestershire team are planning to reboot and organise events for the months ahead, supporting the Vamos Theatre Company's production when it begins to tour again in 2022 with a series of workshops and talks based upon themes in the play.

Before I Die and the contribution of community nursing

The insights and expertise of community nurses would be valuable to any death-positive group. Indeed, one of the core members of Before I Die, a nurse, has had extensive experience of working in the community. The deep understanding that nurses have of the challenges and needs of the patients they work with enables the events devised to match the community exactly. Workshops can be specifically created to overcome identified gaps in public understanding or service provision, or to introduce new initiatives. By attending a group similar to Before I Die: Worcestershire, a community nurse could also gain a good understanding of the attitudes and perceptions around death and dying held by people in the population they serve.

Before I Die and future planning

In the last ‘Let's talk about it’ discussion session before the first COVID-19 lockdown, a topic was raised by an attendee, who volunteers for the local hospital chaplaincy team. She wanted to share her experience of working at the end of life with those from disadvantaged communities, who face considerable challenges during the palliative care process and within palliative care settings. It was her opinion that hospices are perceived as innately middle-class and, therefore, are not being accessed by those from economically disadvantaged backgrounds. This raised the question: how can a good death be planned for, or advance care plans be made, when communities are struggling with financial hardship and the experience of social and economic disenfranchisement?

In this context, it can be argued that the work of grassroots movements like Before I Die: Worcestershire becomes even more vital, empowering everyone to become an expert in their own death, regardless of circumstances, and allowing each of us to explore death and, thereby, celebrate life.

Key points

  • Before I Die: Worcestershire is part of the wider death-positive movement, working to break the culture of silence around death and dying
  • Before I Die: Worcestershire works both creatively and practically in the community, triggering artistic response to themes of mortality and offering practical guidance on the legal and financial aspects of death and dying
  • Community nurses can positively contribute to similar initiatives in their local area, offering their clinical and contextual expertise while tapping directly into the needs of the communities they serve.

CPD reflective questions

  • How could a grassroots death-positive movement encourage your community to reflect upon, respond to and speak openly about death?
  • How might involvement in a grassroots death-positive movement benefit a community nurse, and how could it inform individual practice?
  • From your experience of working in the community, are there any potential barriers to patients speaking openly about death and dying, such as those related to socio-economic or cultural factors, and how could community nurses promote death-positivity?