Natashe Lemos Dekker

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.

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.