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.

End-of-Life Care: Lessons from Other Nations

“…23 works for euthanasia, physician-assisted suicide and prevention of fraud, and funding mechanisms. 12,16,[24][25][26][27][28][29] These differences beg the obvious question, is one service is better than others, or are both appropriate to their individual contexts? Table 2 compares the systems, processes and where possible outcomes of end-of-life care between the U.S.A and the U.K., using Checkland's soft systems approach for the analysis of health care 30 to structure the comparison.…”

“…24,25,41 In addition, around 50% of patients admitted to inpatient hospices do not die on the first admission, but return home and come under a home care service. In the U.K., periods of receiving day care are considerably longer, the median length of care is 182 days, and although around 10% of patients are in day for less than one month, almost 30% are in care for one year or more.…”

Prescription patterns of analgesics in the last 3 months of life: a retrospective analysis of 10202 lung cancer patients

“…Reasons why older people are apparently undertreated for pain are likely to be multifaceted: (1) it may be that older people are less likely to report pain; (2) they may have atypical manifestations of pain; (3) there may be patients' misconceptions about tolerance and addiction to opioids; (4) there may be co-morbidities that limit treatments; or (5) the needs of older people with lung cancer may be missed (Oldenmenger et al , 2009). It is known that specialist palliative care services have seemed to focus on younger patients, rather than those in older age groups (Eve and Higginson, 2000; Lock and Higginson, 2005) and much of the opioid prescriptions may be prompted by palliative care teams. Therefore, it is likely that older people with lung cancer and pain are not receiving optimal treatment.…”

Accuracy of prognosis estimates by four palliative care teams: a prospective cohort study

“…This may be due to the difficulties of multiple health problems in older patients. It might also be one cause of the disadvantaged access of older people to hospice and palliative care services [13,14]. Despite the relative homogeneity of the teams, differences in accuracy existed and remained after adjusting for the other variables in the logistic model.…”