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Research project

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

This project has investigated the globalization and cultural mediation of palliative care practices, policies and discourses.

Duration
2020 - 2026
Funding
European Research Council Starting Grant European Research Council Starting Grant

In light of the the global cultural diversity of end-of-life care practices, and the increase in professional palliative care policies and services around the world, we have examined how palliative care does or does not translate and travel across diverse contexts. We have ethnographically studied palliative care discourses and policies as well as end-of-life practices in three countries with emerging palliative care services: Brazil, India and Indonesia. We thereby looked 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.

Key findings

  • When developed in new settings, palliative care services often combine insights from international palliative care discourses with local values and concepts.
  • The term palliative care may be sensitive in diverse cultural settings. Palliative care professionals often introduce the term carefully or use alternative concepts.
  • Ethnographically following end-of-life care trajectories offers unique insight into how patients and caregivers navigate formal and informal care, how they encounter barriers to access specialist care, and how silence shapes end-of-life care experiences.
  • Having regular moments of ethical debrief and team conversations on ethics before, during, and after ethnographic fieldwork is crucially important to conducting ethnographies of care for people with advanced illness and at the end of life.

An overview of key findings of the overall project as well as the three country-based ethnographic studies can be found in our project infographic (available soon). 

Academic Publications

  • Samuels, Annemarie, Merav Shohet and Natashe Lemos Dekker Forthcoming. When Death is on the Horizon: Temporality, Finitude and Care Toward Life’s End. Rutgers University Press.
  • Lemos Dekker, Natashe, Hanum Atikasari, Syeda Shajeela Shawkat and Annemarie Samuels. 2026. ‘Ethical Dilemmas in Ethnographic Research on End-of-Life Care.’ Anthropology Today 42(2): 23-25. https://doi.org/10.1111/1467-8322.70060
  • Samuels, Annemarie, Hanum Atikasari, and Natashe Lemos Dekker 2025. ‘Sociocultural Dimensions of Community-Based Palliative Care in Brazil and Indonesia: An Ethnographic Study.’ Health & Social Care in the Community. https://doi.org/10.1155/hsc/4624886
  • Atikasari, Hanum. 2025. ‘Care-full Negotiation of Hospital Discharge and End-of-Life Care in an Indonesian Palliative Care Unit.’ Medical Anthropology Quarterly. DOI: 10.1111/maq.70049.
  • Clark, David and Annemarie Samuels eds. 2025. Research Handbook on End of Life Care and Society. Edward Elgar Publishers. https://doi.org/10.4337/9781035317349
  • Clark, David and Annemarie Samuels 2025. ‘Scoping the Field of End of Life Care and Society.’ in: David Clark and Annemarie Samuels (eds.) Research Handbook on End of Life Care and Society, pp. 1-11. Edward Elgar Publishing. https://doi.org/10.4337/9781035317349
  • Lemos Dekker, Natashe. 2025. The global spread of palliative care: how models, ideas and practices travel. In: David Clark and Annemarie Samuels (eds.) Research Handbook on End of Life Care and Society, pp. 505–517. Edward Elgar Publishing. DOI: 10.4337/9781035317349.00044
  • Samuels, Annemarie and David Clark 2025. ‘Concluding Points and Future Agendas: Afterthoughts and Afterlives.’ in: David Clark and Annemarie Samuels (eds.) Research Handbook on End of Life Care and Society, pp. 548-552. Edward Elgar Publishing. https://doi.org/10.4337/9781035317349
  • Samuels, Annemarie 2025. ‘Dying and an Afterlife’ in Edward Lowe (ed.) The Cambridge Handbook of Psychological Anthropology, pp. 367-386. Cambridge University Press. https://doi.org/10.1017/9781009026246.015
  • Samuels, Annemarie 2023 ‘Silence at the End of Life: Multivocality at the Edges of Narrative Possibility.’ American Anthropologist 125(4): 892-895. https://doi.org/10.1111/aman.13922
  • Lemos Dekker, Natashe. 2023. “Palliative care”. In The Open Encyclopedia of Anthropology, edited by Riddhi Bhandari. Online: https://doi.org/10.29164/23pallativecare
  • Samuels, Annemarie and Natashe Lemos Dekker 2023. Palliative Care Practices and Policies in Diverse Socio-Cultural Contexts: Aims and Framework of the ERC Globalizing Palliative Care Comparative Ethnographic Study. Palliative Care and Social Practice. 17. https://doi.org/10.1177/26323524231198546

Multimodal popularizing output

Blogposts

Key events (selection)

  • November 2025 Annual meetings of the American Anthropological Association in New Orleans: three paper presentations on results of the Globalizing Palliative Care project, by Hanum Atikasari, Natashe Lemos Dekker and Annemarie Samuels
  • 26-28 June 2024 Workshop: Anthropology of Care at the End of Life. Organized by the Globalizing Palliative Care team at Leiden University.
  • 6 October 2023 Lecture by Hanum Atikasari on insights from ethnography of end-of-life care. Department of Health Policy and Management, Faculty of Medicine Public Health and Nursing, Universitas Gadjah Mada, Indonesia.
  • June 2023 European Association for Palliative Care Congress. Paper presentation on results of the Globalizing Palliative Care project by Natashe Lemos Dekker and Hanum Atikasari.
  • 7 November 2022. Invited talk at the University of Indonesia “Gender Inequality and Care for People with Advanced Illness in Indonesia: An Exploration”. Hanum Atikasari and Annemarie Samuels.
  • 5 November 2021. Ethics workshop and roundtable with Hansjörg Dilger and the Globalizing Palliative Care Project, at Leiden University.
  • 5-6 October 2021. “Emotions in Fieldwork” workshop with Ferdiansyah Thajib and the Globalizing Palliative Care project, at Leiden University.

Unfolding Finitudes webinar series

  • Anthony Stavrianakis. Crucible of the Incurable: Facing ALS. 25 November 2025.
  • Cheryl Mattingly, Lone Grøn, Harmandeep Kaur Gill, Maria Louw & Lotte Meinert. Imagistic Care: Growing Old in a Precarious World. 20 May 2025.
  • Casey Golomski. God’s Waiting Room Racial Reckoning at Life’s End. 5 March 2025
  • Jason Danely. Fragile Resonance: Caring for Older Family Members in Japan and England. 2 April 2024.
  • Megha Amrith Victoria K. Sakti, Dora Sampaio, H. Kaur Gill, Alfonso Otaegui. Aspiring in Later Life: Movements across Time, Space and Generations. 1 February 2024.
  • Anne Allison. Being Dead Otherwise. 11 October 2023.
  • Adrienne Strong; Documenting Death: Maternal Mortality and the Ethics of Care in Tanzania. 6 June 2023.
  • Jessica Robbins. Aging Nationally in Contemporary Poland. 1 March 2023.
  • Iza Kavedžija. Making Meaningful Lives: Tales from an Aging Japan. 6 December 2022.
  • Bharat Venkat. At the Limits of Cure. 27 September 2022
  • Anna Corwin. Embracing Age: How Catholic Nuns Became Models of Aging Well. 24 May 2022.
  • Mara Buchbinder. Scripting Death: Stories of Assisted Dying in America. 9 March 2022.
  • Dwaipayan Banerjee. Enduring cancer: Life, Death, and Diagnosis in Delhi. 7 December 2021
  • Scott Stonington. The Spirit Ambulance: Choreographing the End of Life in Thailand. 6 October 2021.
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