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Goal: in 2008, an international collaboration got funding by the European Union (7th framework) in order to highlight the knowledge base and expertise in regard of the dying phase, primarily in cancer patients. The objective is to explore what we know and what we don’t know in this area. The project has in addition a direct link to the clinical standard, the Liverpool Care Pathway (LCP) for the dying patient. As outlined in the EU- Commission’s seventh framework, the entire project OPCARE9 is not on performing research in a strict sense, but to define a research agenda for the most burning open questions in this field for the future.
Methods: divided into 5 different work packages, collaborators focus on two different methods: systematic literature review and Delphi technique. For the Delphi process, each work package (WP) has defined a national reference group consisting on professionals and volunteers active in this field. The centre for Palliative Care in St.Gallen has taken over the lead for WP1: an investigation on “signs and symptoms of approaching death”, now called “phenomena”.
Results for WP1: in recent months a systematic literature review has been undertaken. In close collaboration with a centre in Liverpool and Genova a search strategy was defined taking into account that the phenomena around “dying” may not be reported sufficiently in the medical literature alone. More than 5000 original articles have been detected and are now being analysed in terms of earlier formulated selection criteria for a more detailed view.
On the other hand, a first round of Delphi has taken place in order detect as many phenomena linked to the dying phase as possible. The results from the 164 Swiss participants have been supplemented by results from all other OPCARE9 countries (complete sample: 222 participants). A total number of 194 phenomena was found which now will be prioritized in regard of their ability to recognize the last days of life in a second Delphi round.
Conclusion: the participation in this international collaboration is a big stimulus for our centre and the “win” is important in terms of developing interdisciplinary research staff and methodological background. Phenomena around “dying” are numerous, but there is low evidence in terms of its prognostic value up to now. This might reflect the most evident problem in clinical practice to diagnose and agree in a multiprofessional team that a patient is “actively dying”. Many problems like unclear definitions (“what is dying, what is terminal) and cultural influence has been detected so far.