Globalizing Palliative Care? A Multi-sited Ethnographic Study of Practices, Policies and Discourses of Care at the End of Life investigates the globalization and cultural mediation of palliative care practices, policies and discourses. Palliative care is a professional form of end-of-life care. It’s development is relatively recent, and started in the UK in the 1960s. It has rapidly gained traction in high-income countries, where it has broadly become associated with a good death. Significant pockets of palliative care provision have also been developing in middle and lower-income countries over the last decades and currently attention to the global implementation of palliative care services is increasing, amongst others through the discourse of universal human rights. At the same time, anthropologists studying death and dying have long noted the global cultural diversity of end-of-life care practices. In light of this diversity, we seek to better understand how palliative care does or does not translate and travel across diverse contexts.

Our central questions are: How do global palliative care practices translate to various cultural contexts? How do they impact local notions of death and dying? And how, in turn, do culturally diverse practices of end-of-life care shape the practice of palliative care?

This project addresses these questions by using a qualitative ethnographic and comparative approach. We study palliative care discourses and policies as well as end-of-life practices in three countries with emerging palliative care services: Brazil, India and Indonesia. Our subprojects look at the articulation and global mobility of palliative care discourses, policies and models, national level institutional care assemblages and the care trajectories of patients and their immediate caregivers.

The project’s comparative approach and qualitative empirical detail is aimed to generate critical knowledge of processes of professionalizing end-of-life care that will contribute both to scientific theory on the universality and cultural specificity of dying and to the improvement of global end-of-life care services.

Three countries

In Brazil, palliative care units and initiatives are concentrated in urban centers and mostly located in hospitals. The research will both take place in institutions and follow families in the home setting. Fieldwork will be carried out in the metropolitan context of Sao Paulo and smaller towns in southern Brazil. India has multiple promising palliative care initiatives. Research for this project will focus on New Delhi. In Indonesia palliative care is most developed in a few large tertiary hospitals, but is currently including a growing number professional initiatives across the archipelago. Ethnographic research will focus mainly on Jakarta and Banda Aceh.

The project is hosted by the Institute of Cultural Anthropology and Development Sociology at Leiden University. The external ethics advisor of this project is Prof. Dr. Hansjörg Dilger (Free University Berlin).