Periodic Reporting for period 1 - ENDofLIFE (Globalizing Palliative Care? A Multi-sited Ethnographic Study of Practices, Policies and Discourses of Care at the End of Life) Reporting period: 2020-09-01 to 2022-02-28 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. The researchers started writing their individual research proposals.We studied policy documents and had biweekly team meetings, discussing literature and methods. We held online team meetings with experts in the social scientific study of palliative care. We continued the meetings into the second year. Due to the COVID-19 pandemic we have experienced some delay in doing preliminary field visits and preparing for on-site fieldwork, preparations which are currently ongoing. We had online video calls establishing contacts with partners in the three countries of research. In September 2021 we started a 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. We organized two in-person workshops and masterclasses in Leiden on the topics of emotions in the field, and ethics in ethnographic research on end-of-life care, respectively. The PI is currently preparing for an interdisciplinary expertmeeting and public science event on non-disclosure in advanced illness in February 2022, which is immediately related to global palliative care and especially the cultural differences in palliative care practice and policy implementation. 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) Fieldwork is currently in preparation. We expect to start publishing results of the research in 2023-2024. Image made for Globalizing Palliative Care website
