Creative Writing in Palliative Care

Creative Writing in Palliative Care: Finding Meaning in the Stories of Life

‘Arts practitioners in palliative care are present at a crucial transition in the lives of most families, shaped by powerful emotions and new personal relationships and social experiences for patients and their families …creative work permits patients to rehearse their personal reactions to their illness and impending death in a protected and sympathetic environment with others sharing similar experiences.’ (p.99) Creative Health: The Arts for Health and Well-being, All Party Parliamentary Report, 2017

In new research by writers Siobhan Campbell and Meg Jensen, the place of creative and expressive writing in the communities involved in palliative care is being explored in ways which help support creativity and agency during some of the most important days of life.

Finding Meaning in the Story of Life

Finding a voice with which to tell a story, whether one from our experience or one from our imagination, is an act of creation. As visual art therapies have shown, the arts can help participants to meet the challenge of finding meaning in experiences of suffering, loss and death.

With creative and expressive writing, the act of making something happen within language can increase the writer’s capacity to make sense of the randomness and apparent unfairness of life. In poetry, story and memoir, patients, their friends and those who have been bereaved can explore how creating an artwork in words can help to access the unsaid. Poetry and story can capture deep ambiguities through metaphor and symbol, acting as the opposite to dry medical jargon and instead expressing lived experience in personal and individual ways.

Writing to prompts and story starters created by Siobhan Campbell over several years of arts interventions in clinical and non-clinical environments, the results of writing workshops in palliative care can help those facing life-changing situations to find new ways of defining who we are and who we have been. Besides this, the workshops are fun to do, adding to a sense of ‘living every moment’ (as Trinity Hospice London says) and fostering creativity that can lead to new insights.

In essays entitled Dying, Bereavement and the Creative Arts, Gillie Bolton describes how ‘Involvement in artistic processes can offer primary support in the rewriting of a hopeful, helpful, life-towards-death narrative’. The workshops designed by Siobhan Campbell and Meg Jensen (authors of The Expressive Life Writing Handbook) help us to re-establish our place in the world, enabling reflection on memories, hopes and fears and allowing for the imaginative leaps that enliven literary works.

Agency and Legacy

Creative and expressive writing often produces something of real human value which can be left behind, and loved ones treasure the work of those they have lost. Writing about life experiences can create legacy for family members too young to remember, or for those yet to be born. Where the workshops are taken just for pure enjoyment,
the act of making something, seemingly out of nothing, gives a sense of agency that is supportive in the challenge of the end-of life experience. When many areas of life may seem under the control of others, engagement with a creative activity, where you are in charge of the ideas, may increase feelings of control and self-determination.

As Siobhan reports, ‘Often people wonder where to begin writing but our workshops show several places to start - via a word game or directed ‘free’ writing, or following tried and trusted prompts. We are able to meet participants where they are, and no experience is necessary. Think back to nursery rhymes and you’ve got rhythms you can bring into writing; replay your favourite pop song while thinking about yourself as a character, and you may have the beginnings of a life story.’

More than one voice

Because the community of those affected by death and dying includes friends, family and care-givers as well as patients themselves, we prefer when our workshops are offered to three interlinked groups:

Patients and their family and friends
People who have been bereaved
Staff and volunteer care-givers

It can be the case that just when people most need social interaction and support, they are least able to access that easily. We hope the workshops will provide another way to enter into or to stay involved in some kind of cultural practice. As Lucinda Jarrett argues, ‘For patients who are facing death, the process of disappearing from a cultural arena is one of increasing powerlessness. The creative arts clearly have a large role to play in enabling people to find a shape to hold their individual stories’. (Creative Engagement in Palliative Care, 2007)

Allowing for difficulty

Patients in palliative care may be feeling a loss of control over their lives, their illness and in terms of all that has to happen on a day to day basis. Many may have unexpressed feelings of anger, envy, fear and annoyance. Working in reading and writing poetry and story allows for powerful ambiguities to be expressed can support patients in acknowledging the difficulty of their experiences. The resulting writing can include work that communicates deep truths to others and to our wider culture. Workshop participants have reported an increased ability to communicate to their families and loved ones.

Through the process of creative engagement, connections and meanings can be forged which may not have any other means of expression. Metaphor, imagery and characterisation can appeal to all the senses and can approach the subjects of death and dying in ways that are transformative.

The Research

Siobhan Campbell of The Open University and Meg Jensen of Kingston University London are currently working with Trinity Hospice London on a pilot set of writing workshops across the three constituencies mentioned above. This will lead to an outreach evening during ‘Dying Matters Week’ 2018 and to a report that will follow up on the recommendations in the Creative Health: The Arts for Health and Well-Being parliamentary report. Combined with other work with nurse practitioners at NTH NHS Trust, Campbell seeks to influence policy and grant-making in the often hidden area of palliative care and to change the perceptions of what the community around such care can achieve.

Working previously in mental wellness environments, Campbell has mentored early stage writers to their first publications in mainstream literary magazines including Magma and WLA (War, Literature and the Arts). Writers under her tutelage have gone on to citations in literary competitions and to see their work read on radio, thus finding a wider audience and sphere of influence.

For further information, contact Dr. Siobhan Campbell Siobhan.Campbell@open.ac.uk or Dr. Meg Jensen M.Jensen@kingston.ac.uk

For methodology, workshop methods and training, contact Siobhan Campbell http://www.open.ac.uk/people/sc32475