The effects of terminal illness on patients and their carers

Abstract

As part of a larger study, this paper describes the development and design of a project looking at the experiences of the relatives and carers of terminally ill patients in one health authority, as a replication of a similar study undertaken in another area. Following a description of the problems associated with studies into the problems of dying people and of the method used here, the results indicate that there are quite important effects on the household and carers, which include the problem of obtaining a diagnosis of terminal illness, and the actual process of dying. The study also highlights some of the effects of the terminal illness on the patients and their carers. In particular the results indicate that it was usually a spouse or the daughter who bore the brunt of the care, but that most preferred to retain their independence of the services as long as possible. Often, carers (and the patients) were not fully appraised that a terminal stage had been reached. Some doctors seemed reluctant (or found it difficult) to admit that such a stage had been reached. For many, the experience of dying was a very slow, distressing and often painful period, with serious limitations on their lifestyle imposed by the illness. A number of these limitations could have been reduced if earlier diagnosis had been made or if community nursing or social services had been called in sooner.