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

Project Information

ENDofLIFE

Grant agreement ID: 851437

DOI

10.3030/851437

Project closed

EC signature date 26 November 2019

Start date 1 September 2020

End date 31 March 2026

Funded under

• EXCELLENT SCIENCE - European Research Council (ERC)

Total cost

€ 1 500 000,00

EU contribution

€ 1 500 000,00

Coordinated by

UNIVERSITEIT LEIDEN
Netherlands

Periodic Reporting for period 3 - ENDofLIFE (Globalizing Palliative Care? A Multi-sited Ethnographic Study of Practices, Policies and Discourses of Care at the End of Life)

Reporting period: 2023-09-01 to 2025-02-28

Summary of the context and overall objectives of the project

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, our main objective is to better understand how palliative care does or does not translate and travel across diverse cultural 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.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

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. With a research team consisting of the PI, a Postdoc and two PhD candidates we study global palliative care discourses and conduct case studies on end-of-life care in three countries: Brazil, India and Indonesia. In the first year we hired the post-doctoral researcher, the two PhD candidates and a project management assistant.

In the past 2,5 years of the project, the team has had biweekly team meetings, discussing literature, methods and fieldwork findings. We held online team meetings with experts in the social scientific study of palliative care and have invited experts to come over to talk with us about ethics and emotions of doing ethnographic fieldwork on end-of-life care, as well as for conversations on theoretical developments in the field. In September 2021 we started an ongoing three-monthly open access webinar series titled Unfolding Finitudes, in which renowned speakers highlight their recent work in the anthropological study of aging and end-of-life care. This series has had six successful sessions during the reporting period. The project has hosted an ongoing reading group called 'Caring Futures' at Leiden University, that has had 15 meetings during the reporting period. The PI and other research team members have presented on the project's methods, questions and initial findings in more than ten lectures, conferences and workshops. A project website (www.globalizingpalliativecare.com) provides information on the ongoing activities and output of the project. In addition, the team is contributing to creating interdisciplinary dialogues and networks on the topic of global palliative care.

All research plans of the individual researchers have been approved. Due to the COVID-19 pandemic, the team has experienced some delay in conducting on-site fieldwork for the project. One part of the fieldwork has taken place during the reporting period, another part of the fieldwork is currently ongoing.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The project has contributed to establishing interdisciplinary and international networks of scholars studying end of life care and society, among others through co-organizing an international interdisciplinary expert meeting and through hosting the regular Unfolding Finitudes webinar. Data gathering and analysis are currently in progress and results from both individual case studies and comparative synthesis are expected to be published in 2024-2025.

Image made for Globalizing Palliative Care website