Last month and again this week, I have been part of a discussion facilitated by Vicky Thompson at Every-One, about compassionate communities (‘public health palliative care’) in Lincolnshire.
The online meeting last month brought together about forty people from health and social care, community organisations, funeral services and voluntary groups. The question that oriented the lunchtime session was how can we become better at talking about death, dying, grief and care? If we can speak about death and dying more freely, knowledgeably and confidently, we are likely to be able to care for someone more compassionately at the end of their life as well as more easily come to terms with our own mortality and live more fully.
I gave a short presentation to introduce myself and some of the key ideas I am working with. The starting point was the idea that dying is not only a medical event. It is a lived social experience with a physical dimension – most end of life care takes place outside hospitals and clinical settings, among family, friends, neighbours and communities. This shift in perspective (well documented in the literature) raises important questions about how people support one another through dying, death and bereavement, and how communities can become more capable and confident in doing so. I tried to frame the discussion around three ideas:
The first was the concept of the death system: the network of people, places, organisations, practices and symbols involved in preventing death, caring for the dying, disposing of the dead, supporting bereavement and creating meaning around loss. Once we begin looking for it, the death system becomes visible throughout everyday life.
The second was death literacy. Death literacy is the knowledge and skills needed to understand death and dying, care for others at the end of life, navigate support services, and have conversations that many people still find difficult. Rather than viewing death literacy simply as something to be measured, I suggested it can be approached as a curriculum for public learning and community education. You can easily evaluate your own death literacy.
The third idea was compassionate communities. Developed over the last twenty-five years as public health palliative care, compassionate communities recognise that end of life care is not solely the responsibility of professional services. Communities (you and me) have an important role in supporting people who are dying, living with loss, or caring for others. Increasingly, these ideas are reflected in policy and strategy, even where the language of compassionate communities is not explicitly used.
Last year, I undertook the initial training to be an end-of life doula (‘death doula’) and am now volunteering through the national membership organisation, End of Life Doulas UK. I invited Penny Merrett, a much more experienced end of life doula from Sheffield to speak at the meeting about doulas and death cafes. Penny described the role of doulas as providing non-medical support to people approaching the end of life and to those around them. This support may be practical, emotional, psychological or advocacy-based. It can involve helping people navigate services, discuss difficult issues with family members, plan future care, or simply make space for conversations that might otherwise never happen.
One of Penny’s remarks resonated strongly with the theme of compassionate communities. End of life doulas, she suggested, ultimately aim to make themselves redundant: the ideal is not to create dependence on a new profession (its status as a ‘professional’ role is often questioned), but to help build communities where people feel more confident supporting one another through death and dying.
Penny also spoke about her experience of running Death Cafes in Sheffield. Death Cafes are informal, non-profit gatherings where people come together to discuss death over tea, coffee and cake. They are not counselling sessions, bereavement groups or educational workshops. There is usually no agenda. Instead, they provide a structured but open space for conversation, reflection and curiosity. The aim is straightforward: to increase awareness of death and help enrich our finite lives.
At the second meeting, I shared some of the findings from our recent report. One of its central messages is that Lincolnshire already has many of the ingredients needed to support a more compassionate, public health approach to death, dying and bereavement. Community groups, health and care professionals, charities, faith organisations and volunteers are already undertaking related work. The challenge is less about inventing new services and more about connecting and strengthening what already exists.
A recurring theme throughout the discussion was the importance of language, not least being able to have a conversation around death and dying in the first place. Health care professionals are not necessarily trained or used to talking about death either. Participants reflected on how terms such as ‘advance care planning‘ can sometimes sound clinical or bureaucratic. In practice, many of these conversations are simply to help us think about what matters to us, how we would like to live in anticipation of death, and how we would like to be cared for as we approach the end of life. We also recognised that language which works for one community may not work for another, especially where cultural differences, faith traditions or language barriers are involved.
Another discussion focused on community development (see this for a critical perspective on ABCD). Rather than beginning with a list of predetermined projects, we explored the value of starting with an asset-based approach: identifying the knowledge, relationships, experiences and resources that communities already possess. Doulas, death Cafes, festivals and other civic and cultural activities may emerge from this process, but the emphasis should be on enabling communities to decide what is meaningful and useful locally. As I suggested during the session, the principle should be “methods first, projects second.” The asset-based community development (ABCD) approach that is often advocated in the compassionate communities literature is methodologically similar to asset-based pedagogies, which I’ve worked with in one form or another for many years.
We also discussed end of life doulas again and the challenge of building capacity in Lincolnshire. Over 1500 people have been trained by Living Well Dying Well, but End of Life Doula UK have recently stated there is a shortage of trained doulas across the Midlands, with very few currently practising in Lincolnshire. I have been approached about referrals that are too far from where I live to be able to help. We questioned the potential for local training opportunities and reflected on the value of doula approaches in helping people navigate death and dying with practical, emotional and relational support. A lot of work was done in 2023 by a local palliative and end of life care co-production group, who, among other things, identified the need for trained death doulas in Lincolnshire. Unfortunately, this was deemed too expensive by the ICB.
I also drew attention to a new report from the National End of Life Care Coalition, which argues that end of life care extends beyond palliative care. Clinical expertise remains essential, but the report emphasises the equally important role played by families, neighbours, friends and communities. Its recommendations include increasing death literacy through public education and strengthening partnerships between communities and professional services.
The meeting concluded by identifying several practical next steps. These include sharing the ideas of death literacy and compassionate communities through existing health and wellbeing events, exploring interest in a Death Cafe in Lincoln, learning from emerging discussions in Boston led by the Butterfly Hospice, and investigating opportunities again for local end of life doula training.
I’m always a bit cautious when having these discussions because I am still an outsider, entering a space that some people have been working in for years and I don’t want to appear critical of their efforts. I hope it’s clear from our report that there is already considerable activity taking place across Lincolnshire that aligns with or could support a compassionate communities/public health palliative care approach. The challenge is that much of it remains fragmented and can be subsumed in the language of health and wellbeing, when we need to be talking about death and dying. The immediate action seems to be to connect people, make existing ‘assets’ more visible, and create a shared language for work that is already happening. If compassionate communities begin anywhere, they begin with conversations that help people recognise they are not starting from nothing.
