In 2008, I was awarded a Queen's Nursing Institute (QNI) award to use creative writing as a therapeutic tool within palliative care. My background is in psychiatric nursing and general practice.
I had previously completed a creative writing MA, with a view to using this with patients in various ways; as a form of cognitive behavioural therapy, occupational therapy, reflective practice and narrative.1
I put this into practice, providing writing workshops for people with newly-diagnosed diabetes as well as two successful writing sessions in a hospice. These taster sessions prompted the hospice therapist (relaxation and reminiscence co-ordinator Fiona Clark) to ask if I would consider running a writing course for five patients who had requested further development of their writing skills.
To enable me to do this, I applied to the QNI for funding. The institute appealed to me as it also offered support through a professional development programme.
The funding covers my time to support the project and travel to the workshops. I applied in January 2008 and received notification in late March that I had been successful. I have had to write to the QNI on the progress and will also be writing a final report that evaluates the aims and objectives set out at the outset.
These involved implementing creative writing sessions as a form of stress management, in a bid to enhance quality of life and boost self-esteem. I also wanted to think about patients as individuals with interesting stories and personal anecdotes, and to pass on these insights to other health professionals.
To this end, I agreed to provide four consecutive two-hour sessions over the following month. The group of patients was all female. They 'gelled' very well, were all keen to write and very supportive towards one another.
I planned exercises for the four sessions, designed to nurture participants' imaginations and writing skills without inducing negative feelings. However, I also wanted to accommodate many of the members' personal preferences.
When asked, they all agreed they wanted to write something to leave for loved ones. This request was led by a particularly dynamic young mother who, though fighting secondary cancer, was pivotal to the 'up-beat' spirit of the group.
I found that the patients were able to empathise with one other. Nurses may try to comprehend a patient's emotions, but fellow sufferers who are actually experiencing the same painful journey, really can understand what they're going through.
I was also struck by the power of group dynamics. There is a domino effect, whereby the care we give one person can have a positive or negative consequence for the health of others around them. For example, positive feedback on a piece would also be applauded by group members, leading to further narrative of their own experiences and 'connections' between the individuals.
At each meeting, the group passed on tips. At breaks between exercises, they discussed symptoms, how to deal with them and swapped helpful advice.
The request to write in order to 'leave something' for family and friends was repeated every week. My heart sank. This was an unrealistic and huge task: writing life stories is usually a lengthy process and time was a luxury that many of the writers didn't have.
Reflection can also lead to negative feelings around unfulfilled dreams or broken relationships, and trying to put things right by writing them down doesn't always work.
Negativity may be experienced before there are positive outcomes and people do not necessarily have the time left to resolve these issues What is more, unless the writing is done well, it can seem inadequate, and the patient/writer may therefore feel a sense of failure.
A written legacy
Writing for the future can be just as dangerous. For example, the young mother stated that she wanted to write something for her daughter 'so that when she is interested in boys as a teenager I can share that time with her'.
Again this is difficult to respond to; nobody has a crystal ball. If her daughter decided she was gay, her mother's well-meant correspondence may turn out to be upsetting rather than helpful or comforting.
This desire to leave a written legacy made me consider the essence of hope when nursing, particularly when caring for very poorly patients. Once the hope of not dying prematurely is taken from them, the patient's psyche adapts to other more attainable hope.
This hope changes over the various stages of illness. For example, it might be 'to live to see a daughter marry'; 'to live to see next Christmas'; or 'to see a first grandchild'. Whatever form hope takes, it is a vital psychological necessity in coping with extreme illness.
With disease progression, hope shifts to more spiritual and altruistic levels: that those left behind will have happy lives; that there will be an afterlife; that there may be some communication with loved ones; that the world left will be a good one.
In the final stages, hope narrows: people wish to see one more sunrise; to smell a favourite flower; to know they are not alone; to recognise familiar voices; to feel kind hands. As carers, we try to respond to this hope, to anticipate people's wishes.
Some terminally ill individuals seem unnecessarily 'fussy'. One patient, when discussing how awful they felt when having chemotherapy, said how comforting it was to have tea served in a proper tea-cup with a saucer. The small gestures become huge, and, for some people whose lives have narrowed, mean the difference between a good day and a bad day.
Focusing patient thoughts
The women expressed a lack of concentration as a very irritating side-effect of illness. Thought processes can be overwhelmed when engulfed with a diagnosis of cancer. They all said the writing exercises focused their thoughts, and throughout the four-week course, they took great pleasure in surprising themselves. 'Where do these ideas come from?' they would often ask. 'It just flows.'
At each session, this desire to leave written work for loved ones persisted. I discussed with the hospice therapist how we could address their request realistically. This was new territory for all and could turn out to be an emotional minefield.
The patients also had the opportunity to make memory boxes and I didn't want to duplicate work done there.
Always at the back of my mind was the concern that writing specifically to leave something special for loved ones might make patients feel worse rather than better and, as in any therapy, my first principle was to do no harm.
Our solution was to produce a small pamphlet of patients' work, comprising two to three pieces, each of which came from the workshops. The work produced would give patients a little collection to keep and to give to family and friends. It was achievable within a short time-frame, and wouldn't be as emotionally fraught or time-consuming as writing 'life stories'.
People could write and complete work to be included in the pamphlets over the coming month. It was arranged that I would meet up with them at the end of this period on a one-to-one basis and edit their writing with them.
We felt that seeing people individually would mean we were better equipped to deal with any psychological problems or emotional disturbances caused by their writing. Also, editing each individual's work isn't done easily in a group.
The group was very enthusiastic about the whole enterprise; all participated and the completed work was printed in a small booklet. The hospice therapist arranged a celebratory launch event, to which family and friends were invited, complete with drinks and nibbles.
The women were invited to read out their work. We were delighted to hear them do this, and obviously very proud of their achievements. They enjoyed autographing copies as requested.
The work included in the booklet is about these women, their families and their lives. Most of the pieces are small cameos in prose or poetry form; they are imaginative and funny - work to be proud of.
The pieces do not tell us these individuals' whole life stories, but we have a taste of the people they are. Perhaps the booklet publication went a little way towards meeting their hope: 'To leave something for loved ones.'
From the feedback I have received, in qualitative questionnaires from both patients and hospice colleagues, I believe my original aims, around building participants' self-esteem, reducing their stress and providing a source of enjoyment, were certainly achieved.
There were also several unexpected outcomes: for example, the tremendous support the writing group members offered each other and the noted domino effect of positive and negative feelings upon group dynamics referred to earlier.
The sessions also highlighted the need for health professionals to respond to patients' actual - rather than perceived - needs, even if this isn't on their initial agenda.
Further funding is currently being sought to continue the creative writing project as it has proven to be successful, in fact, there are hopes of developing a creative centre for patients at the hospice.
- Bernadette Higgins is a practice nurse, psychiatric nurse and writer who has been involved in a range of arts-related health projects. This feature was written with the help of Fiona Clark, the hospice's relaxation and reminiscence co-ordinator.
Aims of the writing course
- To use creative writing as a form of stress management and a source of enjoyment for palliative care patients.
- To enhance the quality of life for patients with limited time left to them.
- To encourage self-esteem in this group of patients.
- To help health professionals to see patients as individuals with interesting stories and personal anecdotes rather than generic 'patients'.
- Network of support provided by group members to one another
- 'Domino effect' of positive and negative feelings upon group dynamics
- Recognition of the importance of health professionals responding to patients needs even if these are not on their initial agenda.
- For an example of a patient's creative writing see the online version of this feature at www.healthcarerepublic.com.
- Mitchell G. Palliative Care. A patient centred approach. Oxford: Radcliffe Publishing; 2008.
- Baikie K, Wilhelm K. Emotional and physical health benefits of expressive writing. Advances in Psychiatric Treatment 2005; 11: 388-46.
- Nicholas, A, Christakis. Health Care in a web. BMJ 2008; 336: 1,468.
- Darling J. The Poetry Cure. Northumberland; Bloodaxe books: 2005.
- Kennett C. Palliative Medicine. 2000; 14; 419-35.
- Kubler-Ross E. On death and dying. London; Tavistock Publications Limited: 2005.
1. Higgins B. Independent Nurse. London: Haymarket Medical Publications; 3 March 2008.
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Source Citation:"Independent Nurse: Professional - Using creative writing in palliative care.(Personal account)." GP (March 16, 2009): 45. General OneFile. Gale. Alachua County Library District. 14 Oct. 2009
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