In these stories there are witnesses to death as well as those who have had a taste of their own mortality. By telling these stories we are trying to put something in place for future generations that may not have the same support systems as in the past.

Maria Whatton, storyteller and writer, alongside Manjula Patel worked over a period of nine months with participants from the local area to help them tell and formalise the stories you will find in this collection.  Maria shared myths, legends and folk tales from around the world with the participants. Participants in turn related their first hand encounters with dying, death and mortality.

You will also find a story called ‘The First Primrose’, which is a newly written piece by Maria.  It speaks in the language of poetry and metaphor encapsulating the main themes the writer found in the participants’ stories. ‘The First Primrose’ then is a direct response to participants’ experiences.

Context for the stories

In the twenty-first century what do we draw on to make sense of the end of life? How do we see clearly what is right in front of us? The answers to these questions will either be enhanced or made worse by our expectations. What do we as individuals bring to the table in terms of our religious beliefs, spiritual beliefs, culture, traditions and experiences?

We will all die. The manner of dying and death is different for us today as compared to say a century ago. In the western world death is now mostly viewed under a medical lens. There have been numerous medical developments, which allow us to recover from situations where previously death would have been an expected outcome. We live longer, but these developments also make the fine line between living and death difficult. Now it is possible for body parts to be replaced, vital organs such as heart and liver, which only fifty years ago may have seemed impossible. Renewal is now part of our psyche. Prior to these groundbreaking advancements there would have been certain death. Faced with a situation such as this, many questions need to be answered: will this replacement benefit my life or do I come to terms with my body dying? Will this give life quality or life longevity? Is getting both achievable? Will it actually work? All these things and others come into play.

The NHS is geared towards the curative mode, so it doesn’t always know how to help us differentiate between life and death. For some there are benefits, for others there aren’t. The notion of a natural death is difficult to embody.

It is time for the public, all of us, to think about and to tussle with these difficult issues because we need to be part of how we die well. Death for us all is inevitable and dying and death as a human being is more than our medical state.

Perhaps it is time that we begin to regard our medical care for the end of life in the same way that we now look at the beginning of life - childbirth. It is now commonplace for women to plan the birth of a child right down to the music that they want played during labour. Birth plans include an ideal scenario and a back up plan for if things go differently, which may require hospitalisation.

Our communities have lost some of the knowledge and wisdom for dealing with dying and death. We seem to have become disconnected from and forgotten how to accept that death and dying is a natural part of life. We have forgotten what to do, how to be engaged and how to lead. It is a paradox, a dialogue of conflicting forces: on the one hand we know that ultimately we’re going to die, on the other we are so intrinsically involved in the process of living that it may be difficult to engage with the idea of life ending.

We hope that these stories will be part of our regaining our connection to our inner and collective wisdom about dying and death. 

Pauline Smith
End of Life Care Lead NHS West Midlands