Background The concept of a ‘good death’ is unique and individual; yet key elements of good quality of care for the dying make it a global issue. The aims of the International CODE project (2017–2020) were to:
assess quality of care for dying cancer patients within seven European and Latin American countries, by undertaking a bereaved relatives’ survey
use survey results to implement clinical changes within one European and one South American country.
Translate ‘Care Of the Dying Evaluation’ (CODE) questionnaire using standardized procedures; adapt CODE for different cultural settings using pre-testing survey methods involving patient and public representatives and bereaved relatives.
Conduct post–bereavement survey (by post, interview or on-line completion) to those with a family member dying from cancer in hospital (>100 completed questionnaires per country).
Discuss preliminary survey findings at public engagement events; focus on interventions to improve areas perceived to be poorer in quality.
Future work involves quality improvement strategies to implement clinical changes and further psychometric testing of questionnaire.
Results Translation and pre-testing work conducted (involving 48 patient and public representatives and 35 bereaved relatives). Modified nominal group technique helped form consensus about international version of the questionnaire (i-CODE). Preliminary reporting (601 completed questionnaires) showed perceptions about care were generally good. Although there were differences between countries, focusing on improving communication about the provision of fluids and what to expect when someone is dying represent areas for improvement. Plans in progress for public engagement events (Autumn, 2018).
Conclusions A common, core international questionnaire has been developed with key questions relating to quality of care for the dying; this will help identify core areas that require improvement. User-involvement was fundamental to enhancing the face and content validity of i-CODE; it will continue to be instrumental in converting the research findings into the meaningful clinical change.
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