Objective: Due to changes in regulations and the mentality, optimal communication between patients and caregivers is now regarded as a major topic in end-of-life care. To improve the quality of end-of-life care, practice guidelines, based on evidence (EBM), are considered an important tool. According to a more recent and broadened definition, Evidence Based Medicine rests on the best research evidence, clinical expertise and patient values. However, no methodological standards have been developed on how to include the view of the patient in guidelines.
Method: Screening of methods used in development of guidelines on end-oflife care in which communication is important. Guidelines were searched in PubMed by using the MeSH terms "Palliative care" OR "Terminal care" AND "Communication", limited to "practice guidelines" with an abstract.
Results: 26 Abstracts were found of which 11 were based on expert groups, one on a review of the literature and 5 on a combination of the two. 9 Abstracts did not specify the used method. Only 1 stated the direct involvement of patients. The most frequently used method for development of guidelines on end-of-life care and communication is a combination of a review of the literature and expert groups.
Discussion: Although the voice of the patients may resound indirectly through the literature, patients are very rarely consulted or involved directly, e.g. by using interviews or other empirical methods. Especially for guidelines about end-of-life care and communication, the subjective point of view of the patient is pivotal. Therefore, empirical, phenomenological data aiming at exploring patients' wishes and concerns, seem to be a valuable but neglected additional source in the development of guidelines.