The use and validation of CODE (Care Of the Dying Evaluation): an international multicenter study

Abstract

Cancer is one of the leading causes of death worldwide, and the number of new cases is rising. Despite new developments in treatments, a substantial number of cancer patients die from their disease. Ensuring dying cancer patients and their families receive high quality care and support wherever they die, is of paramount importance. One method of evaluating this is to use post-bereavement questionnaires, such as 'Care Of the Dying Evaluation' (CODE TM). CODE focuses on the last days of life and immediate bereavement period and seeks perceptions about quality of patient care and level of family support, and has been assessed for validity and reliability. This project would seek to conduct an international survey of bereaved people using CODE, to assess the current quality of care at an international level, enable comparisons between countries, and develop a common benchmarking tool. Based on transnational cooperation, key findings from the survey will be utilized to implement clinical practice changes, involving bereaved relatives in the action planning. The immediate impact of these changes will be assessed from a patient, family and healthcare professional perspective. The planned project outcomes are an international report on the current status of care for dying cancer patients, a common international outcome measurement tool, and guidance on how measurement results can be used to improve quality of life for dying cancer patients. (AU)