In conversation with Annemarie Samuels

I am currently studying care, decision-making and communication in advanced life-limiting illnesses and at the end of life. I do so through studies of global palliative care, as well as research on end-of-life care in the Netherlands. I am also collaborating in several interdisciplinary studies in Indonesia and the Netherlands. When I did my long-term ethnographic research projects in Aceh, Indonesia, first on post-tsunami recovery and then on HIV/AIDS care in the province, it struck me how people related to death and how important the approaches to death and the afterlife were for caregiving at the end of life. That brought me to asking questions about palliative and end-of-life care. How do people care at the end of life? How does such care vary across and within societies, and how is it embedded in structures of social inequality? How do diverse values and power relations shape end-of-life care? Those questions are crucial not only scientifically, but also societally.

This is a huge question, on which whole books have been written. But perhaps by way of short introduction, Aceh is the northwesternmost province of Indonesia. It has a rich and turbulent history, including as a flourishing center of trade in the 16th and 17th century, and as one of the last places of the archipelago to be occupied by the Dutch colonizers in the 20th century, but only after the bloodiest war in Dutch colonial history. After decades of severe conflict, Aceh was struck by the Indian Ocean Tsunami 2004, causing unimaginable death and destruction. I visited Aceh first in 2007 to conduct research on remaking everyday life after the tsunami, and later to study HIV care. I have returned many times, and I have come to very much appreciate the strength, hospitality, humor and care of many people who I came to know – many of whom had lived through violent conflict and disaster. According to available statistics 98% of people living in Aceh is Muslim and Islam is for many of the people who I know there an important part of everyday life. There are various very good higher education institutions in Aceh and I have been fortunate to have been in conversation and collaboration with excellent Acehnese researchers from early on in my career.

We live in ageing societies with persistent social, and global, inequalities. Societal values of care are also shifting. Whereas in the past healthcare provision in life-limiting illness tended to focus on lengthening life and postponing death as long as possible, the focus is increasingly shifting to discussing when to stop treatment and focus on “comfort care” and “quality of life”. But what is “quality” or “comfort”, and to whom? We need critical empirical research to show how values of care at the end of life are negotiated and may in practice mean very different things to different people. This is the focus of one of my current research projects. At the same time, globally there is a huge inequality in access to palliative care. With the ERC Globalizing Palliative Care research project we have shown how professionals and communities develop palliative care in different ways across different countries. Anthropology can not only contribute to a better understanding of these various models and the socio-cultural specificities, but also to developing critical perspectives on the inequalities in knowledge production in global palliative care specifically, and global health more generally.

“Silence” is a topic that I have been interested in for quite a while now, related to my continuous research focus on narratives. In Dutch, and I think also German, society openness, transparency and speaking is often seen as “better” than silence, particularly in healthcare. Yet – focusing on life-limiting illness – not everyone may want to know their prognosis or even diagnosis. Sometimes that needs time. Sometimes people do not want to know at all, or simply do not want to talk about illness and end of life care. Fortunately, healthcare professionals have become much better at breaching the topic with those patients who do want to talk about it – even if there is also still a world to win there. At the same time, I am intrigued by how quickly talking about illness and dying switches from being a welcome possibility to being moral need.

That silence may be oppressive and a shelter at the same time, I learned from my ethnographic research on HIV/AIDS in Aceh. While societal silence around HIV/AIDS contributes to continuing stigma, not disclosing their HIV positive status to people around them may allow individuals to live on socially in their communities. Silence may not only be oppressive, but may also be an act of care. Ambivalence, moreover, or holding on to contradictory paths or approaches at the same time, may allow people to keep open future possibilities. Whether this speaks directly to the current geopolitical moment I don’t know, but I do think there is potentiality for social and public anthropologists to attend carefully to silences, which can relate to trauma, pain and oppression, as well as care, respect and sociality – and many other complex affective and political situations.

The insights I hope to generate with my research are at once anchored in very particular situations and human lives, and speak to critical theory about society and societal challenges that we face globally. The topics of speech and silence at the end of life, of shifting values in end-of-life care in ageing societies, but also of unequal distribution of health and access to palliative care, are all very relevant to Germany too.

That is a great question! Just focusing on my current project on end-of-life care and decision-making, I hope that we will gain critical awareness of the diversity of ways in which people approach – and discuss – the end of life. I also hope that preparation for how to communicate with and care for patients with such diverse preferences and approaches will be better integrated in medical curricula. Finally, I think it is crucial that we value co-creative and collaborative forms of knowledge production. These may be international collaborations, but also highly local projects, for example projects that together with citizens develop more accessible pathways to palliative care within neighborhoods.