A Macmillan Cancer Relief funded study - Amanda Bingley

AIMS:
To analyse a sample of narratives written since 1950 by people knowingly facing death as a result of cancer and other illness, in order to compare experiences and show how these relate to wider changes in practice in end of life care.

METHODS:
A bibliographic search of libraries, archives, journal and internet sources located English-spoken literature including books, poems, newspapers, journal articles, diaries, and internet postings of writings by people facing incurable, terminal illness. Bibliometric and qualitative content analysis explored changing authorship, experiences, purpose in writing, and reported impact on readers.

RESULTS:
The search strategy yielded a possible sample of millions of writings, fuelled by the internet. Inclusion/exclusion criteria were applied and a purposive sample of 148 writings by different authors since 1950 were reviewed, with a sub-sample of 63 of these writings subjected to detailed content analysis.

DISCUSSION:
Over the last 55 years there have been changes in both the volume of available literature and patterns of writing about end of life. With few writings in the 1950s and 60s, from the 1980s there was an increase in books and journal articles. The 1990s and 2000s saw a sharp rise in all types of literature but unprecedented internet communications. Only a tiny proportion actively reports end of life. Therapeutic benefits in writing are reported combined with a strong sense of purpose in sharing the story. People emphasised the importance of maintaining their individuality, social, and family life when dying. In spite of improvements in palliative care people continue to report problems of communication with medical staff, symptom control, facing the realities of suffering, and the spiritual aspects of dying. Between cancer and other illnesses clear differences were found in the nature and style of writing.