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Globalizing Palliative Care? A Multi-sited Ethnographic Study of Practices, Policies and Discourses of Care at the End of Life

Project description

Access to palliative care around the world

Palliative care is a relatively recent form of professional end-of-life care with cultural roots in Western Europe. Over the past decades, it has become widely practiced in North America, Europe, Australia and Japan, and presently we are seeing a rapidly increasing attention to developing palliative care services worldwide. Given the huge global diversity in approaching dying and end-of-life care, the ENDofLIFE project sets out to study why and how this particular form of end-of-life care is globalizing. It will investigate the expansion of palliative care and how practices, policies and discourses are translated, adapted and reconstituted in diverse socio-cultural settings. The project will focus on emerging palliative care services in Brazil, India and Indonesia. It will ethnographically study the interaction between the global mobility and articulation of palliative care discourses, national-level institutional care assemblages and local end-of-life care trajectories.

Objective

This project will undertake a comparative and multi-scalar medical anthropological study of the globalization and cultural mediation of palliative care practices, policies, and discourses. Its central objective is to gain insight in what is universally shared and what is culturally specific in end-of-life care, by analyzing how local end-of-life care practices impact palliative care and how globally circulating discourses of palliative care are transforming local notions of death and dying.

In a few decades, palliative care has become widely associated with a good death in high-income countries. Given the current international attention to expanding palliative care to the global south, in particular in relation to the notion of a human right to palliative care, it is essential that we better understand how palliative care does or does not translate across diverse cultural contexts.

To this end, this project will research:
1. Why palliative care is expanding globally
2. How palliative care practices, policies and discourses are translated, adapted and reconstituted in diverse socio-cultural settings
3. How this process is impacted by culturally diverse, non-institutional practices of end-of-life care and notions of good dying

The break-through scientific question that this research will address is:
What is universally shared and what is culturally specific to practices of end-of-life care and notions of good dying?

Building on the PI’s previous research on morality and AIDS care, this project develops a novel analytical approach that focuses on the dynamic interaction between the global mobility and articulation of palliative care discourses, national-level institutional care assemblages, and local end-of-life care trajectories. To discover how this interaction works in practice, ethnographic research will be conducted in international organizations and three countries with emerging palliative care services: Brazil, India, and Indonesia.

Host institution

UNIVERSITEIT LEIDEN
Net EU contribution
€ 1 500 000,00
Address
RAPENBURG 70
2311 EZ Leiden
Netherlands

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Region
West-Nederland Zuid-Holland Agglomeratie Leiden en Bollenstreek
Activity type
Higher or Secondary Education Establishments
Links
Total cost
€ 1 500 000,00

Beneficiaries (1)