Living with a terminal illness: patients' priorities

Our understanding of terminal illness and its consequences has been predominantly based on models derived from expert definition, rather than the patient's perspective. More recently, quality of life tools have been developed to enable patient choice in responses. However, an even broader approach may be needed to help identify goals for care for patients who are terminally ill.

The aim of this paper is to report on an exploratory, qualitative study exploring what people living with terminal illness considered were the areas of priority in their lives.

Ten people living with terminal cancer were interviewed. Analysis of the interviews incorporated principles of narrative analysis and grounded theory.

Over 30 categories were identified and collated into five inter-related themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge) encompassing the issues of importance to all participants. Each theme focused on 'life and living' in relation to life as it was or would be without illness. Practical issues of daily living and the opportunity to address philosophical issues around the meaning of life emerged as important areas. The central theme, 'taking charge', concerned with people's levels of life engagement, was integrally connected to all other themes.

The findings suggest that the way in which health professionals manage patients' involvement in matters such as symptom relief can impact on existential areas of concern. Understanding patients' perspectives in relation to each theme may assist health professionals to develop management strategies appropriate to their needs. The findings challenge some aspects of traditional 'expert-defined' outcome measures. As this was an exploratory study, further work is needed to test and develop the model presented.