Support needs in the last year of life: patient and carer dilemmas

Abstract

The aim of this study was to identify needs for support and problems in the introduction of support to terminally ill patients and their carers. The design involved semistructured interviews with patients and carers as well as a survey of general practitioners' (GPs) views, and took place in GP practices and homes of patients in Cambridgeshire. The subjects comprised 43 terminally ill patients, 30 carers, 80 GPs and 13 of their GP partners. The main outcome measures were quantitative data about additional help required and qualitative data on reasons for reluctance to seek help. Needs for help with transport, personal care and housework were identified. Carers may also need reassurance from health professionals. The need for outside help may at times conflict with the need to preserve independence, dignity and familiar aspects of life. Sometimes carers may feel that there is need for more help, but that this conflicts with patients' wishes. There may also be reluctance to seek help because of a perceived lack of resources and professionals' time. In conclusion, an increase in services is necessary but not sufficient to meet patients' needs fully. Services should be introduced in ways that help patients to preserve independence, dignity and familiar aspects of life. The perception of accessibility to health professionals may need to be improved. Carers' needs should be assessed separately from patients' needs.