As dying has become increasingly medicalized, both healthcare professionals and patients are recognizing that less medical intervention can sometimes lead to a better experience of the last phase of life. But how do people decide on such interventions? We explore how patients, their relatives, and healthcare professionals draw on ethical and cultural frameworks in these difficult decisions. These decisions may become more complicated when patients, families, and healthcare providers have differing perspectives on what the best care would be. Rather than focusing on a single clinical moment, this study looks at how treatment decisionsin advanced serious illness unfold within the broader context of patients' and healthcare professionals' social lives and care networks, taking into account their diverse experiences and backgrounds.

A “good death”

The project starts from the insight that different people may have different ideas about what constitutes a "good death" and what makes a decision "good" in terms of medical treatment. Such differences become particularly relevant in the societal context of an aging population, increasing medical options, and social inequality in access to care.

Patients, professionals, and public discourse

Using qualitative research methods, the project brings together three scales of decision-making at the end of life. First, it involves an ethnographic study of patients and their close caregivers, following them as they navigate decisions about life-extending treatments when curative options are no longer available. Second, it examines the experiences of healthcare professionals, exploring the dilemmas they face and how they approach these complex decisions. Third, the project looks at public discourses, analyzing societal norms and values around end-of-life medical interventions as seen in media, policy reports, and public discussions.

Long-term ethnographic research

By combining these perspectives—patients, professionals, and public discourse— we aim to better understand how treatment decisions are made and how they are shaped by differing values, power relations and social inequalities. Both patients and healthcare professionals are studied through long-term participant observation and interviews to capture the full scope of these decision-making processes and their implications for care trajectories and professional practice.

• end-of-life care
• ethnography
• health
• healthy society
• medical anthropology
• netherlands
• social inequality

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