This study was funded by Macmillan Cancer Relief and conducted by a team of researchers: Professor David Clark, Dr Carol Thomas, Dr Liz McDermott, Dr Amanda Bingley, and Thomas Lynch at the International Observatory on End of Life Care, Institute for Health Research, Lancaster University (in association with CECo - the Cancer Experience Collaborative), and Professor Sheila Payne and Dr Jane Seymour at the Palliative and End of Life Research Group, University of Sheffield.

The study is divided into three distinct, but related projects exploring narratives written about end of life issues. We present the main findings and key recommendations arising separately from each project. The first project examines medical professionals' writing (since 1975) concerning their experience in caring for people with cancer; these writings are not the products of research, but are made up of both personal and professional reflections on particular experiences and cases. The second project examines writings (since 1950) produced by people facing death as a result of cancer and other illnesses, and the third project examines writings (since 1950) produced by those caring for a person approaching death as a result of cancer or other illnesses; these are made up in the main of personal stories and narratives, published in books, newspapers and magazines, as well as on the world wide web.

We were particularly interested to identify the major issues that emerged from the different sets of narratives, including: the needs of patients; the impact of changes in palliative care provision; the reported experience of professionals working in end of life care; the experience of people facing death; and the experience of those caring for a person approaching death. A group of service users participated in the professional and patient projects by commenting on a small sub-set of each of the two sets of writings. An informal carers' group were invited to comment on a small sub-set of writings but felt unable to participate. We have not specifically compared or contrasted findings between the three projects. However, we found that there are considerable differences in professionals' perceptions of the effect of service provision on patients, and the narrated experience of people facing death and those who care for them.