Palliative care practices and policies in diverse socio-cultural contexts: aims and framework of the ERC globalizing palliative care comparative ethnographic study

Abstract

Background: Palliative care as a specialist professional practice of care for people with advanced illness is becoming increasingly influential worldwide. This process is affected by global health inequalities as well as cultural dimensions of approaching death and practicing care in life-limiting illness. Objectives: The European Research Council-funded Globalizing Palliative Care (ENDofLIFE) project aims to understand how palliative care policies, discourses and practices are translated, adapted and reconstituted in diverse socio-cultural settings and how cultural dimensions of approaching death and local practices of care shape palliative care implementation. Methods and Analysis: Using a multi-scalar and multi-sited ethnographic approach, the project uses person-centered ethnography, participant observation, semi-structured interviewing, focus group discussions and policy and discourse analysis at transnational, national and local levels. Ethnographic case-studies are conducted in Brazil, India and Indonesia. Discussion: The globalizing palliative care project develops a novel ethnographic methodology of studying end-of-life care trajectories through long-term participant observation with individual patients and families as they manage and practice formal and informal health care in advanced illness. By analyzing how patients and families experience and navigate care over time, complemented by stakeholder interviews, the study advances critical theoretical insight into the relation between (large-scale and dynamically traveling) palliative care models, policies and discourses on the one hand and the experience and practice of palliative care in the lives of patients and informal care givers in local health care practices on the other hand. Insights are expected to benefit culturally situated palliative care policies and practices.

Palliative Care in the Ageing European Population: A Cross-Country Comparison

“…Moreover, these variations can also be associated with socio-cultural contexts. For instance, engaging in discussions about death and dying with patients may be deemed problematic or inappropriate [43].…”

Palliative Care

“…Anthropological studies have underscored the wide variety of ways in which illness and dying are perceived and treated, as well as the variety of needs and expectations across social and cultural settings (Souza, Borgstrom and Zivkovic 2021;Zaman et al 2017). This great diversity inherent in care means there is an important role for anthropologists in showing how palliative care is provided differently across cultural and institutional contexts; how people of different backgrounds, including professionals, patients, and families, each relate to it; and how they use and adapt palliative care's key principles to fit within their own work, lives, and networks (Samuels and Lemos Dekker 2023).…”

“…A key contribution of anthropologists to the field of palliative care has been to demonstrate how seemingly universal principles and definitions are being understood, taken up, and challenged in local, sociocultural contexts, and to look in detail at how palliative care is being provided in and beyond care institutions such as hospitals and nursing homes, as well as at home (Samuels and Lemos Dekker 2023). Stonington (2020), in his work on end-of-life care in Thailand, shows that palliative care was conceived of as a new concept and discussed only in its English terminology in an otherwise Thai linguistic context, showing a glimpse of the friction in the cultural adaptation of palliative care between globally circulating discourses and locally rooted practices.…”