Minimum dataset activity for hospice and hospital palliative care services in the UK 1997/98

Abstract

This study reports on the third in an annual series of surveys covering England, Wales, Scotland and Northern Ireland on the activity of palliative care services. This report concentrates on inpatient (hospice and hospital) services. All 640 known UK palliative services were sent a standardized questionnaire asking about the characteristics and numbers of patients cared for. Results were analysed for those services primarily for adults. From the 189 inpatient units (2955 beds) there was an 84% response rate in total, but the response to many of the questions was lower than this. Sixty per cent of services recorded 24 362 new patients, and about 50% provided details showing that 96.7% patients had cancer, and one-third were aged under 65 years. This is higher than the national distribution of cancer deaths where 24% are under 65 years. Conversely, only 7% were in the over 84 age group, which has 14% of cancer deaths. Most patients (73%) were admitted from their own home. Half of the admissions ended in death, and the majority of discharges were to the patient's own home. The mean length of stay was 13.1 days, with larger units tending to have a longer length of stay. Forty per cent of admissions were for one week or less (2.3% of patients died on the day of admission) and 15% were for more than three weeks. Bed occupancy varied between 99.7 and 48.9%. Responses were received from 74% of the 326 hospital support services, although again many questions were answered by less than half of those eligible to do so. Details of 37 194 new patients were reported (5.9% did not have cancer, although there was a wide range between services). Patients typically had four contacts with the service, although almost a quarter were single contacts. Three-quarters of the contacts were by a clinical nurse specialist. National estimates suggest that of the 155 000 patients dying of cancer in the UK each year 27 600 (18%) die in a hospice. There are 39 000 new hospice admissions each year and about 100 000 patients have contact with a hospital support service. Overall, the national provision of palliative care is increasing but there are groups who still appear to be missing out on palliative care, especially older people. Increasingly, patients appear to be admitted to a hospice earlier in care and are discharged home.