Communication and awareness about death: a study of a random sample of dying people

Abstract

The literature suggests that doctors' and nurses' openness about communicating with the terminally ill and their families has increased in the past two or three decades, partly influenced by the hospice movement. The present study reports the perceptions of relatives, hospital doctors, general practitioners and nurses who knew a random sample of 639 adults dying in England in 1987. The results from professionals suggest a general preference for openness about illness and death, tempered by the consideration that bad news needs to be broken slowly, in a context of support, while recognising that not everyone wishes to know all. In practice people dying from cancer were more likely to be reported as knowing what their illness was and that they would die than were people dying from other conditions. This difference held when controlling for the fact that death was more likely to be medically expected in cancer. Comparisons with 1969 show that the increases were due largely to cancer patients being told the truth more frequently by hospital doctors. This may be due to changed practices, or to the increase in the number of hospital episodes in the last year of life. Nevertheless, situations of 'closed awareness' where relatives were told and patients were not, and situations where patients were left to guess the likely outcome for themselves, were still quite common in 1987. Nurses and hospice practitioners were only marginally involved in breaking bad news, this remaining the province of hospital doctors and general practitioners. Relatives in general praised the manner in which they and patients were told, although a small proportion reported insensitive practice. In retrospect a high proportion of both relatives and professionals felt that the levels of awareness were best as they were, although this preference may have been influenced by a desire to see things in a good light. Most relatives reported adequate support and information being given by professionals to them during the patient's illness. On the whole, doctors provided information, and friends and family provided emotional support to relatives. Again, hospital doctors played an increasingly important role compared to 1969 in providing information, with general practitioners' role decreasing in this area. Gaps in information included not being told enough about what was wrong with the patient, not being told the reasons for decisions about treatment and, to a lesser extent, not being given information about how to care for the patient.