Over the summer I have been trying to look at Lincolnshire through the public health concept of ‘Compassionate Communities’ (or ‘Compassionate Cities’), first written about 20 years ago. Compassionate Communities are a form of ‘public health palliative care’ that reframes death and dying as primarily a social experience rather than a physical experience. In practice, they are usually different types of community development projects that aim to improve a population’s understanding and experience of death, dying, loss, and caregiving. Advocates of this approach argue that end-of-life care is everyone’s responsibility, but what does that mean in practice, in the lives of individuals and the life of a community? What does it look like in Lincoln and Lincolnshire?
A startling observation, made by Allan Kellehear (2022), is the ‘95% rule’:
“Overall… dying people spend less than 5% of any one day in front of a doctor or nurse… For dying patients, their caregivers, and the bereaved, this will always mean that over 95% of their time is spent alone, with friends and other family, with neighbours or work colleagues, with animal companions, or with the internet or the television.”
One way of responding to this is to consider the death literacy of a community. Death literacy is defined as: “the knowledge and skills that people need to make it possible to gain access to, understand, and make informed choices about end of life and death care options.” (Noonan et al., 2016) There is a set of questions you can ask yourself here.
It’s the public health education component of this that interests me, enabled through community development work. In the death literacy framework, it’s referred to as ‘social action’ and ‘community knowledge’. How do we become better at talking about dying, caring for those who are dying, and caring for the carers, too?
I’ve written up what we’ve found so far. It’s the start of something.
An Exploratory Report for Compassionate Communities in Lincolnshire