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Making sense of dying: a review of narratives written since 1950 by people facing death from cancer and other diseases

Institute for Health Research, Lancaster University, Lancaster, a.bingley{at}lancaster.ac.uk

E McDermott

Institute for Health Research, Lancaster University, Lancaster

C Thomas

Institute for Health Research, Lancaster University, Lancaster

S Payne

School of Nursing and Midwifery, University of Sheffield, Sheffield

JE Seymour

School of Nursing and Midwifery, University of Sheffield, Sheffield

D Clark

Institute for Health Research, Lancaster University, Lancaster

This article reviews a sample of narratives written since 1950 by people knowingly facing death as a result of cancer and other diseases, 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, journals and internet sources located English spoken literature, including books, poems, newspapers, journal articles, diaries, and internet postings of writings by people facing terminal disease. Bibliometric and qualitative content analysis explored changing authorship, experiences, purpose in writing, and reported the impact on readers. Results: The initial search located a wide range of published and unpublished narratives, to which inclusion/exclusion criteria were applied, yielding 148 narratives by different authors since 1950. A purposive sub-sample of 63 of these narratives was reviewed. Discussion: Over the last half century there have been changes in both the volume of available literature and patterns of writing about end of life experience. Therapeutic benefits of writing are reported as a way of making sense of dying combined with a strong sense of purpose in sharing the story. There is a clear awareness of social needs when dying, along with issues of communication with medical staff, symptom control, realities of suffering, and spiritual aspects of dying. Differences are found in the nature and style of writing about cancer in comparison to other illnesses.

Key Words: facing death • narratives • patient experience

Palliative Medicine, Vol. 20, No. 3, 183-195 (2006)
DOI: 10.1191/0269216306pm1136oa


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