Providing adequate care for terminal patients is receiving more and more attention from society as well as science. There is growing agreement that the quality of the last phase of life is an important additional aim of medical care.
Research has pointed out that physicians are frequently taking end-of-life decisions (ELD) but that this is not always done carefully. Patients are e.g. not always involved in these decisions (Deliens et al., 2000). A way to take the patients' opinion more into account and to improve the ethical-medical quality of ELD, is the useof a protocol or guidelines by physicians.
The purpose of this study is the development of such a protocol for the primary health care. The aim is to optimise the participation and communication of all participants involved in ELD, to determine how patients should be referred to e.g. the hospital, the way physicians preferably react to a demand for life-shortening or life-ending treatments, etc.
Qualitative methods seemed to be most appropriate. Semi-structured interviews and focus group interviews are planned with all actors involved (physicians, nurses, palliative teams, patients with life-threatening diseases, family members of patients who recently die, etc...).
In a first phase, the data collection is aimed at making an inventory of the needs and problems concerning ELD. This should result in the design of a protocol for the ethical-medical quality care for ELD in primary health care. In a second phase, the protocol will be tested among physicians and other actors involved in ELD, to see if it is suitable and acceptable.
About fifty interviews and five focus groups are planned.