Constructing understandings of end-of-life care in Europe: a qualitative study involving cognitive interviewing with implications for cross-national surveys.

Abstract

Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown. To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey. An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC. Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios. Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe.