Karin Torvik

Patient demographics and centre description in European palliative care units

Patients in palliative care are elderly, frail and in decline with multisystem disease. These and other factors make palliative care research particularly challenging, and has been one of several reasons why relatively little systematic research has been performed. The European Association for Palliative Care (EAPC) is seeking to emphasise the importance of research. The present project is the first empirical multicentre study organised by the EAPC Research Network, with the aim of identifying the patient population using specialised palliative care, and identifying a network of palliative care services across Europe, able to participate in a multicentre collaboration for research. During a designated week in the autumn of 2000, data on patients were recorded from 143 centres. The survey was carried out by means of two questionnaires, one centre questionnaire and one patient questionnaire. Data were submitted on 3013 patients from 22 different European countries. Almost all patients had cancer (94%), while some had neurological disease (3%). The majority (75%) had been referred to a palliative care service during the six to seven months before the survey was performed. Very few patients had less than one week of expected survival (6%), the majority were expected to live one to six months, while as many as 16% were expected to live more than one year. The majority of the patients (27%) were fully ambulatory - the ability to walk independently without any assistance. The majority of the patients (60%) received care as an outpatient, either at a traditional clinic in an outpatient cancer hospital (12%), in home-care programs from a specialised advisory service (24%), or external nursing care (24%). The population of patients included in this survey was not a sample of dying patients. There were a substantial number of patients with an anticipated life expectancy of more than six months. The study demonstrated a considerable enthusiasm for research in the palliative care community across Europe. The heterogeneity of the sample is evident, and this will need careful consideration for future clinical trials. This calls for an international consensus on how to report on patient characteristics within palliative care research. This is necessary in order to be able to evaluate the representativity of the study population, as well as to compare data between studies. The range of services encountered in the survey highlights the need for the organisational and clinical standards for palliative care, which can be audited.

Pain in patients living in Norwegian nursing homes.

The aims of this study were to describe the pain and use of pain medication in nursing home patients and examine which variables that were associated with pain. Inpatients (n = 307) older than 64 years from nursing homes were included. Pain was measured with a 4-point verbal rating scale in the self-reported group (SRG) and Doloplus-2 in the proxy-rated group (PRG). The mean age was 86 years (SD, 7), and more than two-thirds were female. A total of 128 (60%) patients were able to self-report their pain. Approximately 50% of the SRG reported ‘pain now’, and of these, nearly 50% reported moderate or severe pain intensity. Better cognitive function was associated with higher pain and receiving more potent pain medication in the SRG. The pain prevalence in the PRG was higher than in the SRG (67.5% vs 51%), but no variable was associated with proxy-rated pain. Nearly 30% in the SRG and 40% in the PRG did not receive pain medication in spite of pain. Pain is still a huge problem in the nursing homes, and more research is needed on pain management in nursing home residents.

Former Work Life and People With Dementia

Twelve persons with dementia were interviewed about their former work lives. Their motivation for choosing their past work was influenced by values of their contemporary culture. Those who had come to terms with their illness had positive feelings about their past contributions in their former paid work. However, they often felt that unpaid work was taken for granted and not fully recognized by family or society. Some wrestled with accepting their illness; they were grieving their losses, regardless of former success. Caregivers may use parts of work narratives to elevate the self-esteem and quality of life of persons with dementia.