Palliative care has been defined by the World Health Organization as an approach to improve the quality of life of patients who face life-threatening, chronic diseases. Pain relief and treatment of other physical or psychosocial problems are among the main goals of palliative care. Palliative care should not only address the patients' needs, but also the requirements of their families and caregivers. Physical as well as psychological, social and spiritual aspects of care are core elements of this approach . With the rise of chronic diseases and prolongation of life expectancy in Western European countries, palliative care performed by professional carers already is important today and will presumably gain importance in the years to come. There will be a growing number of patients suffering from serious chronic conditions. At the same time, changes in the age structure will cut back the potential of families and other informal caregivers for adequate nursing care. The existing health care systems will have to be adapted to cope with these new challenges .
Palliative care structures in Western European countries evolved at different paces and levels of intensity . In Germany, palliative care structures have been developed both in the inpatient and the outpatient sector, but these current structures are still insufficient . This especially applies to the outpatient sector. Until recently, only a tiny fraction of the necessary professional palliative homecare services existed. A nationwide survey in 2004 showed a number of 1100 ambulatory hospice services based mainly on the commitment of volunteers compared with only 35 specialised palliative homecare services . Further on the availability of palliative care services in Germany is characterised by considerable regional differences with very well developed services in some urban areas in contrast to extensive gaps in rural areas [6, 7].
Since numerous studies have shown that the vast majority of patients wish to die at home, this obvious deficit in the home care sector is even more worrying [8–11]. Moreover quality of life and satisfaction of patients are generally rated more favourable when people are cared for in their homes with help of specialised palliative care teams [12–16]. Finally, homecare seems also to be superior to inpatient care with respect to public expenditures in the health care system [17, 18].
In order to tackle the deficits in the provision of palliative home care, profound structural changes in the outpatient sector were introduced by law in Germany in 2007 . With this new law, specialised outpatient palliative care services are rendered possible nationwide. With the new law every patient in need has the right to receive specialised palliative home care. Out of this an obligation to reimburse this service arises for the health insurances. Currently this reimbursement is negotiated in many regions in Germany . The practical implementation of this law was expected to start by the end of the year 2008 after the framing of the corresponding guide-lines.
In order to evaluate the effects of these profound structural changes, accompanying research is necessary. Will the structural changes really improve the situation of patients and families? How will quality of care and satisfaction with care develop? To answer these questions, the situation as it was before the structural changes must be documented in a first step. The overall aim of the EPACS study (Research Accompanying the E stablishment of Hospice and Pa lliative C are S ervices in Rhineland-Palatinate, Germany) is therefore to gain a representative picture of end-of-life inpatient and outpatient care in the federal state of Rhineland-Palatinate, Germany, as it was before the introduction of new specialised palliative home care structures.
We intended to identify unfulfilled needs of patients and relatives, utilisation of specialist palliative care services, existing gaps and satisfaction with different settings of end-of-life care.
With this article we focus on the study design and methods of the EPACS-Study, and analyse factors that could have influenced participation in our study. We further report first results regarding several aspects of outpatient end-of-life care, as these are of special interest in the light of the upcoming structural changes.