Objective: To describe the quality of care received in the last year of life by people who die from cancer, focusing particularly on symptom control, communication with health professionals, and care in the community.
Design: Interview survey of family members or others who knew about the last year of life of a random sample of people who died in the UK in 1990, based upon methods used in nationally representative surveys by Cartwright in 1969, and Cartwright and Seale in 1987.
Setting: Twenty district health authorities from a range of inner city, outer urban and rural settings. Although self-selected, districts were nationally representative in terms of social characteristics and on many indicators of health service provision and usage.
Participants: Interviews were obtained for 2074 cancer deaths out of a random sample of 2915, a 71% response rate.
Main results: At some stage in the last year of life, 88% were reported to have been in pain, 66% were said to have found it to be 'very distressing', and 61% to have experienced it in their last week. Treatment that only partially controlled the pain, if at all, was said to have been received by 47% of those treated for pain by their GPs and by 35% of hospital patients. Other common symptoms experienced by more than half the sample in their last year were loss of appetite, constipation, dry mouth or thirst, vomiting or nausea, breathlessness, low mood, and sleeplessness. Half of the respondents (51%) were unable to get all the information they wanted about the patient's medical condition when they wanted it. Relatives bore the brunt of caring for 81% of the sample. Of respondents who had helped to care for the deceased, 65% said that their activities had been at least fairly restricted, but 53% had found it rewarding. District nurses had helped 60% of the deceased, 20% had had a home help, and 9% had received 'meals on wheels'. More help with activities of daily living was reported to have been needed by 31%; 24% were reported to have needed more help with domestic chores; 25% were reported to have needed more financial help, and 29% were reported to have needed either more care from district nurses (if had some) or some care (if had none).
Conclusion: There is still some way to go before all dying cancer patients receive high quality care. Education in the principles of palliative care is needed at all levels of the NHS if high standards are to be reached. In addition, adequate resources are required to meet the social and health care needs of cancer patients at home. There is, as yet, no room for complacency about the care of dying cancer patients.