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Objective In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. Design/Setting/Methods A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. Results In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. Conclusion This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. [ABSTRACT FROM AUTHOR]

The article presents a study which evaluates the reliability and feasibility of a set of quality indicators (QIs) in palliative care settings and services across Europe. Among the methods used are descriptive statistics, chi-square analysis, and analysis of variance. It shows that the set of QIs seemed to measure four reliable domains including equipment and continuity of care, personnel training and appraisal, and availability of controlled drugs.

Background: Little is known about the practice of palliative sedation (PS) in Germany. This paper presents an analysis of sedation-related data obtained from the German standardized core documentation system (HOPE) for palliative care patients. Methods: HOPE was complemented by an optional module on ethical decision making (EDM) which was pretested in 2004, data was collected in 2005-6 during the annual 3-month census. Data was analyzed descriptively from palliative care units (PCU - representative) and inpatient hospice (H - non-representative control group). Chi2 test was used to test for differences between the reported data per item and year within one kind of setting (significance level p ≤ 0.05). Free-text entries were categorized inductively. Results: Datasets were obtained for 1,944 patients (P) with EDM. PS was performed in 13.0/11.8% (2005/2006) P in palliative care units (PCU) and 25.5/22.9% in hospices (H). Main reasons for PS in PCU were dyspnea, pain, fear or anxiety, in H reasons were inconsistent, high prevalence of psychosocial reasons. Most PS in PCU and about half of the PS in H were intermittent. Sedated P were younger than non-sedated. Only 7 P received PS after asking for euthanasia. The most used medication was midazolam. Conclusions: This study reveals a first insight into the use and practice of PS in German PCU and H. For a more detailed systematic survey into the course of decision-making and procedures, a new complementary optional module on PS is being developed by the HOPE group. [ABSTRACT FROM AUTHOR]

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available. [ABSTRACT FROM AUTHOR]