How is palliative care implemented and practised in diverse cultural contexts? A new ERC-funded anthropological research project explores how palliative care changes end-of-life care in Brazil, India, and Indonesia – and what these local experiences mean to global models for palliative care. Dr Annemarie Samuels, Assistant Professor of Cultural Anthropology and Development Sociology, Leiden University, and Dr Natashe Lemos Dekker, Postdoctoral Researcher, Institute of Cultural Anthropology and Development Sociology, Leiden University, The Netherlands, explain more and welcome your input.
Palliative care is globalizing. As the recently launched second edition of the Global Atlas of Palliative Care shows, an increasing number of countries around the world are developing palliative care services, and there is a growing variety of models of palliative care implementation and practice. How do such models travel? How are professional guidelines and practices adjusted to diverse cultural and institutional contexts? And how do professionals, patients, and families incorporate the possibilities offered by palliative care into their existing modes of non-institutional end-of-life care?
The central objective of our project 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. We broadly consider “end-of-life care” to involve all institutional and non-institutional practices of care in the last phase of life, and “palliative care” to be a more specific professional model and practice of end-of-life caregiving. We build on the idea that while patients, families and care-workers travel, so do ideologies and models of health care, such as palliative care. As palliative care discourses and policies are formed and articulated in international organisations, they travel to countries with emerging palliative care provisions where they get translated and transformed in relation to already existing locally specific practices of end-of-life care.
Our social scientific research project explores globalizing palliative care through a comparison of ethnographic case studies in Brazil (São Paulo), India (Delhi) and Indonesia (Jakarta). These countries all have a growing infrastructure for palliative care, but these services have not yet been integrated in the mainstream healthcare provision. Therefore, these countries provide excellent contexts to study the institutional embedding of international discourses and policies of palliative care in relation to informal end-of-life care provision. Brazil has an active palliative care specialist network, and services are as yet mostly concentrated in urban centres and hospitals. In India, the state of Kerala has been very successful in implementing palliative care, while in other states the services are more fragmented. In Indonesia, palliative care is mostly developed in several large hospitals. The researchers in the project will ethnographically follow patients and caregivers across institutional and non-institutional settings. While policy will be studied at the national level, within each country the researchers will select specific hospitals and communities as case studies. They will also compare palliative care practices and policies between the three countries and examine how these relate to global health policies and discourses on palliative care.
The great advantage of qualitative methods here is that they allow us to interact with and observe a number of patients and families over time in their naturally occurring everyday practices of care, including in home and hospital settings. We hope to see when, where and how they cross boundaries between palliative care and other (non-institutional) forms of care, including family care and religious and traditional healing. At the policy level, our qualitative interviews aim to give a rich picture of the institutional challenges, opportunities and innovations in each country.
As anthropologists have long experienced in their research, translation goes both ways. Ultimately, we therefore aim to contribute to analyzing the potentialities of global palliative care models. How do we, in Europe, engage with models developed elsewhere? And how can a global palliative care benefit from the cultural variety in professionalization of end-of-life care and embrace plurality? (1)
As our research project develops, we very much welcome your input, questions and suggestions! Please contact us via the links below.
1. Zaman, S., H. Inbadas, H. Whitelaw, and D. Clark. 2017. Common or Multiple Futures for End of Life Care around the World? Ideas from the ‘Waiting Room of History.’ Social Science and Medicine 172: 72-79.
Links and resources
- Contact Dr Annemarie Samuels by email.
- Contact Dr Natashe Lemos Dekker by email.
- Follow us on Twitter @ERC_PalliativeC
- Globalizing Palliative Care Project website.
- Download a copy of the Global Atlas of Palliative Care, 2nd edition.
- Redefining Palliative Care – A New Consensus-Based Definition, L Radbruch et al, Journal of Pain and Symptom Management Volume 60, Issue 4, October 2020, Pages 754-764. Download a copy here.
The Globalizing Palliative Care research project is funded by the European Research Council under the Horizon 2020 Research and Innovation Programme (Grant Agreement no. 851437)