Culture is a priority for research in end-of-life care in Europe: a research agenda

Abstract

Context: Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent.

Objectives: An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts.

Methods: Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques.

Results: Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity.

Conclusion: This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care.