Bridging the gap: the implementation and concurrent evaluation of an integrated care pathway [ICP] for the last days of life, for residents dying in nursing homes

With the current emphasis in specialist palliative care of disseminating palliative care principles to generalist settings, the importance of palliative care and practice development has never been so important. An evaluation of a recent palliative care education study (Froggatt 2000) however showed difficulties in new knowledge being integrated into care homes. The Bridges Initiative (Hockley 2003) is a 5-year action research study, which has as its key aim the development of palliative care in independent nursing homes. Action research is a methodology where the thrust of the research is not only in close collaboration with all stakeholders, but also includes a dynamic for bringing about change as part of the research design. An earlier part of this study developed a model for guiding best practice in relation to end of life care. This paper reports the final year of the study with the implementation and concurrent evaluation of an ICP for the last days of life in eight volunteering nursing homes. A key aspect of the evaluation methodology was to engage participants sufficiently in the research process so that they had some ownership of the research and were motivated to bring about change in practice. Methods used in this study include: value clarification interviews to establish participants beliefs about what represents ‘good’ end of life care, interviews with all key stakeholders including relatives, and assessment of the ‘culture of care’. The methodological challenges of this
study will be discussed. These include how to do research ‘with’ rather than ‘on’ people, the use of action learning to support participants in research that focuses on change, and how to enhance the ownership of the research among research participants. The impact of the methodology on the outcomes of the study will be debated. It will be argued that creative methodologies need to be developed to bridge the gap between research and practice in palliative care.