One of the ambitions included in a national framework providing a vision for high quality palliative and end of life care at a local level highlights the role of community. Ambition Six, ‘Each community is prepared to help’, focuses on the readiness, willingness and confidence of people to have conversations about living and dying well and to offer support in times of crisis and loss. Recently, Open Thanatology hosted a webinar where a panel of speakers with experience of community action were asked to consider the question ‘Should communities be expected to help in death, dying and bereavement?’. 

Here we focus on the panellists’ insights to discuss relevant issues raised by this question.  

What is a ‘community’?

As an idea, ‘community’ is hard to define. Often, communities are understood in terms of geography; however, they can be defined in other ways, such as communities of identity (for example, of heritage or culture), or of faith or other beliefs. Communities are constantly changing and there will be overlaps between different communities. 

Each community will have its own priorities and expectations around death, dying and bereavement, all of which will influence how a community responds and provides support.    

Opening up the potential for community support in death, dying and loss

Death, dying and loss are some things that all of us will experience. However, they are not necessarily discussed in day-to-day life. People may be fearful of intruding or of causing distress to those experiencing death, dying and loss. In recent years, there has been a growing recognition of the value of accepting and responding to death and dying as part of our shared everyday lives. There are now specific resources to help; examples include EASE (End of Life Aid Skills for Everyone) and the Omega Course, where people come together to think about their own lives and death and learn how to support others. 

Evaluation of these courses has shown that they reduce fears around death and dying, help people to consider and plan for their own death, and increase their confidence to engage with friends, family and community members who are experiencing death, dying and loss. The evidence suggests that empowering people to ‘confront’ their own mortality is important both personally and in terms of enabling a willingness and capacity to help others.   

I know when people know that I am dying, they cross the road when they see me coming. I wish they wouldn’t. I know why they do it. They don’t want me to get upset. They don’t want themselves to get upset…

(quote from the panel discussion)

How can communities be supported to help in death, dying and loss?

In practice, although a ‘whole community’ approach to providing support is talked about, it is often a minority of people providing most of the support, often on top of other professional and personal responsibilities. Balancing the demands of their day job with their passion and commitment to supporting others can be difficult to manage. Depending on a relatively small number of people makes it hard for the provision of support to be consistent, highlighting the importance of recognising that volunteers are more than simply free resources. This includes acknowledging that communities may not be able to offer support all the time.

Resources that may aid a community’s ability to support include:

• Being part of a national network of people who are all working towards the same/ similar goal. This can be particularly helpful in allowing people to feel part of something bigger and allows good networking opportunities. 
• Being supported by a national organisation with access to resources. An example of this in practice is the Truacanta Project, a community action initiative supported by the Scottish Partnership for Palliative Care.
• Support from local charities. 
• Financial assistance, for example small grants to help fund activities.
• Educational opportunities.
• Administrative support – managing bureaucratic and administrative workloads that are often part of community approaches can be extremely burdensome.  

Securing practical resources, such as funding, can present challenges for communities. They may be caught between maintaining their independence as providers of support on the one hand and satisfying the requirements for state recognition as a legitimate provider of support on the other. Moreover, the constant pressure to secure funding, often in the form of relatively small, short-term grants, creates uncertainty about if or how long support can be provided. 

Should communities be expected to provide support?

Ambition Six in the national framework – ‘Each community is prepared to help’ – creates an expectation that communities should do so. This idea raises several questions. Is this an expectation and aspiration of communities themselves? Or does it come from the statutory sector, driven by the increasing requirements for care of an ageing population and an inadequate health and social care workforce? Moreover, is it acceptable to place the ‘burden’ of providing help on those who may not have had opportunities to develop confidence in supporting others? It could be suggested that any expectation on the part of the State promotes a ‘them and us’ situation, which sets up the notion that communities can provide support in place of or instead of the statutory sector, and creates division rather than collaboration.    

If communities are to provide support, then the form that support takes needs to be driven internally. It cannot be imposed, for example by statutory providers looking to fill identified gaps in state provision. Acknowledgement of community expertise regarding the support that should and can be provided given available resources is necessary. One way of enabling communities that fits with these requirements follows a community development approach. Here, existing community knowledge, skills and assets are developed with external assistance, for example from statutory or third sector organisations providing advice, funding, learning or networking. The aim is to lay the foundations of sustainable support. 

A final thought: If communities are unable to provide support in death and dying, their dependency on statutory care provision increases. If we think about social support as something that should be a normal feature of social life, then the question becomes not one of should communities be expected to help, but rather why should communities not be expected to help?   

This Open Learn article is based on a panel discussion recorded on 24 January 2024.  The panel was comprised of: Caroline Gibb (Community Development Lead at the Scottish Partnership for Palliative Care); Dr Chantal Meystre (Director of The Omega Course) and Dr Guy Peryer (Lecturer and NIHR Applied Research Collaboration (ARC) East of England Palliative and End of Life Care Research Fellow). The recording is available as an episode of the Open Thanatology Talks! Podcast series, available on Spotify and Amazon Music.