Study title

Cancer is one of the leading causes of death worldwide, and the number of cancer cases is increasing. An important part of cancer care is to ensure dying cancer patients and their families the best treatment, care and attention, wherever they are. This project had partners from Argentina, Brazil, Uruguay, Poland, Germany, the United Kingdom and Norway. The aim was to develop a common, international questionnaire to evaluate care in the dying phase, an international report on the status of care at the end of life, as well as guidance in using results from the questionnaire for specific improvement measures. In the project, the English questionnaire CODE was translated into the main language of each country and pilot-tested on volunteers from the population and survivors of cancer deaths. Through a consensus process, we arrived at a common, international version of the form (i-CODE). i-CODE was then used in an international survey of survivors of cancer deaths in hospitals in the seven countries. The results showed aspects of treatment and care that worked well, but also areas in need of improvement, in the individual country or across countries. The results from the survey were discussed in focus group interviews with survivors in each individual country, with emphasis on the "weakest" areas. Based on these inputs, quality improvement measures were implemented at the participating hospitals. The interventions in Argentina and Poland were included in the project plan and used recognized quality improvement methodologies. The effect of the interventions was mapped using action research. The other partners take measures on a smaller scale. The project has resulted in an international, validated questionnaire (i-CODE) to evaluate the care of dying patients and their relatives, an international report on the status of the care of the dying and guidance on how the results of i-CODE can be used for concrete measures to improve care at the end of life.