Community nurses and the care of the dying

A study of a random sample of adults dying in 1987 is compared with a similar study in 1969 examining peoples' experience of home nursing care during the last twelve months of life. Respondents were 639 relatives and others in the community who knew the circumstances of the people who had died and 92 community nurses (mostly district nurses) who provided care. Both nurses' and relatives' perceptions of the adequacy of care showed little change between the two time points, in spite of less frequent visiting. Changes in the management of patients and their families, towards emphasising the supportive and educational role of nurses, may explain this. However, nurses tended to be less willing to criticize standards achieved when contemplating individual episodes of care with which they had been involved, than when making judgements about the adequacy of the nursing service for the dying in general. Explanations for this are proposed. Areas of tension in nurses' relationship with general practitioners were evident, particularly over the issue of late referral and control over the prescription of pain relieving drugs. Nurses' information needs at referral were also sometimes not met very fully. The stress involved in this type of work was substantial, and nurses expressed a strong desire to spend more time supporting families emotionally, which was often hampered by late referral, a problem that had increased significantly since 1969.