Open Encyclopedia of Anthropology - Death

Palliative care

Rebecca Tishler — Thu, 12 Oct 2023 08:09:23 +0000

Edvard Munch : The Sick Child, 1927, 6th in the Series. Photo: Munch Museum

Leiden University

Initially published 12 Oct 2023

Abstract:

Palliative care has been developing since the 1960s as a form of caregiving that focuses on the relief of suffering when there is no prospect of a cure or when a patient is at the end of life. Originating in the UK and US, palliative care has been taken up by global institutions such as the World Health Organization (WHO), and implemented in various cultural and socioeconomic settings. Anthropological studies have long been highlighting the wide variety of experiences and needs in illness and dying and have problematised the supposedly universal ideas behind palliative care. After a brief discussion of the historical and institutional development of palliative care, this entry highlights the links between palliative care principles and notions of a good death. It then turns to the medicalisation of death and the primacy of choice in palliative care discourses. It elaborates on anthropological studies that have observed how palliative care comes to relate to existing end-of-life care practices and the diversity with which local practitioners and care recipients give shape to this new care paradigm. Finally, it discusses various cultural and moral attitudes towards disclosure and concealment of dying as a site of friction in palliative care.

Introduction

Palliative care is commonly understood as professional caregiving that focuses on the relief of suffering when there is no prospect of a cure or at the end of life. Its central aim is to provide comfort, by focusing on symptom management and pain relief, as well as psychosocial and spiritual care. The word ‘palliative’ stems from the Latin pallium, which translates as ‘to cloak’ and is associated with the aim of providing comfort and alleviation that is inherent in palliative care. While definitions of palliative care continue to be subject of debate, as will be outlined below, the most commonly cited is the 2002 World Health Organization (WHO) definition:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (84)

Derived from hospice care, palliative care has been developing since the late 1960s into a form of caregiving that is practiced in various care institutions as well as in home care settings. Palliative care has developed into an interdisciplinary field of expertise in and of its own, with prominent contributions from medical disciplines such as nursing, oncology, and geriatrics, as well as social work and social sciences, and its practical implementation is accompanied by a range of studies on best practices and the development of palliative care tools and models.

While palliative care is considered to have originated in the UK and builds on preceding developments in care for the dying in Western Europe and the US (Clark 2016), it has since then been promoted and taken up in other parts of the world. However, it cannot be assumed that palliative care is developing across the globe in the same manner and with the same effect. Hence, anthropologists have begun to study palliative care as a particular mode of end-of-life care that comes with particular sets of values and norms, exposing how it comes to exist alongside, reform, or replace existing end-of-life care structures and practices across geographical and institutional settings.

From an anthropological perspective, palliative care is approached as emerging from, and embedded in, cultural contexts, where it forms one particular way of managing illness and dying. As such, it has grown into a topic of interest both to researchers who position their work in the anthropology of death and in medical anthropology. Through immersive fieldwork, anthropologists have shed light on the lived experiences of patients, caregivers, and their networks. Taking critical as well as constructive approaches towards the paradigm of palliative care, anthropologists have asked questions such as: How is palliative care used in organisations and embedded in health systems? And how is care negotiated and what values does it reflect? Recognising, further, that death is not the great equaliser it is sometimes portrayed to be, but rather that dying is characterised by inequalities and difference, anthropologists have been interested in how access to palliative care is distributed between people of different backgrounds and across the globe. Also, anthropologists are critically assessing the use of terms like ‘dignity’, ‘quality of life’, and ‘comfort’ which are central in palliative care and are reflected in the WHO definition, and taking up the empirical question of what such terms come to mean in their local context.

In the sections that follow, and drawing on a range of anthropological studies, this entry first discusses the historical and institutional development of palliative care. It proceeds with a discussion of the ideals underlying palliative care and its connections to notions of a ‘good death’. It then turns to the medicalisation of death and the primacy of choice in palliative care discourses. Finally, reflecting on the uptake of palliative care in diverse cultural settings, it discusses various cultural and moral attitudes towards disclosure and concealment of dying as a site of friction in the palliative care paradigm.

Genealogy of palliative care

The development of palliative care can be traced back to the 1960s and 1970s. It emerged as a response to the then-dominant focus on curative practices in healthcare, while patients were increasingly living with chronic conditions for which no cure was available (Clark 2007). By contrast, palliative care focuses on improving the quality of life of people who are dying or who live with a chronic condition. Although it does not exclude curative treatment, one of the key aims of palliative care has been to relieve suffering, including psychological, social, and emotional, as well as physical pain.

As founder of the first modern hospice in 1967 in the UK, Cicely Saunders is considered a pioneer in the development of palliative care (Clark 2002, 2007, 2016; Seymour 2012). Her work in oncology as a nurse and hospital almoner, and later as a medical doctor, provided her with a unique perspective on patients’ conditions. She observed a lack of pain control in cancer patients, and became concerned with what she called ‘total pain’: the suffering of patients that extends beyond physical pain and reaches to their entire being, including social, physical, mental, and emotional distress. Around the same time, Elisabeth Kübler-Ross, through her work in hospitals and as a lecturer in the US, advocated a novel focus on the needs of dying patients and support for families and is credited with opening up the possibility to discuss death in Western society (Blaylock 2005; Sisk and Baker 2019). Both Saunders and Kübler-Ross have been central figures in the development of palliative care.

From the 1980s onward, palliative care rapidly developed into an area of specialisation that has been incorporated across different disciplines, including oncology, nursing, and geriatrics. In practice, palliative care is usually provided by multidisciplinary teams, involving for instance medical doctors, social workers, psychologists, nurses, and spiritual advisers. Medical associations and dedicated journals have been established to delineate the field of palliative care. Hence, palliative care is both a field of knowledge and a professional practice. The European Association of Palliative Care (EAPC) was founded in 1988, the Latin American Association of Palliative Care (ALCP) in 2000, and the Asia Pacific Hospice Palliative Care Network (APHN) in 2001 (Clark 2007). Additionally, palliative care has gradually become, or is in many countries in the process of becoming, embedded in national health structures, as well as in global health programmes. While palliative care was initially focussed on oncology, this has gradually broadened to other (chronic) illnesses, including HIV/AIDS, and increasing attention has been paid to the potential benefits of palliative care for older people (Davies and Higginson 2004; Visser, Borgstrom and Holti 2020). While this reflects the ‘holistic’ character of palliative care, this also implies palliative care is subject to a wide variety of interpretations, approaches, and backgrounds.

Considerable discrepancies in approaches and definitions remain, and these continue to be the subject of debate among researchers and practitioners alike (Pastrana et al. 2008). The WHO published its first definition of palliative care in 1990 and revised it in 2002. The latter (cited above) continues to be commonly used, but has since then been reformulated, both by the WHO itself and other organisations such as the International Association for Hospice and Palliative Care (IAHPC) (Radbruch et al. 2020). Additionally, many organisations that provide palliative care in practice will describe it in their own terms (Hui et al. 2012). Often, these definitions reflect in one way or another Saunders’ concept of ‘total pain’, as palliative care is described as holistic, person-centred, and provided by multidisciplinary teams, and is associated with meaning and dignity at the end of life.

However, anthropologists have shown that, within these broad characteristics, in practice the concept also remains unclear as some practitioners use the terms ‘terminal care’, ‘end-of-life care’, and ‘palliative care’ interchangeably (Lemos Dekker, Gysels and van der Steen 2017), while others explicitly differentiate them (Hui et al. 2012). Also, the use of ‘hospice care’ outside of hospice settings where others might use the term ‘palliative care’ indicates that the boundaries of the concept are not always clear.

Furthermore, the anthropological record has demonstrated that health systems and institutions are often unequally accessible, to which palliative care is no exception. The degree to which palliative care is accessible or integrated in health care systems varies widely between countries (Clark et al. 2020), and may further be influenced by a patient’s positioning in terms of class, ethnicity, and gender (Richards 2022).^{^[1]} Also, the often limited and unequally distributed availability of opiates, limitations in a patient’s mobility, and institutional structures can challenge the accessibility of palliative care (Knaul et al. 2018).^{^[2]}

As this entry will show, palliative care is embedded in diverse cultural contexts, and as such is interwoven with particular values, practices, and beliefs. 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).

Palliative care and the good death

Anthropologists have generally taken a contemplative approach to palliative care, to shed light on its underlying values and its implications at a sociocultural level. In particular, this research has underscored that palliative care is informed by ideals that are associated with a ‘good’ death. Hence, palliative care has been suggested to form a specific, institutionalised approach to operationalising ideals of a good death and to bring these into medical practice (Hart, Sainsbury and Short 1998; McNamara 2004).

Anthropological studies have demonstrated that the good death forms a moral objective that underpins people’s narratives, decisions, and actions (e.g. Hart, Sainsbury and Short 1998), whereby anthropologists have asked what a good death is to different individuals and groups, unravelling the social and cultural dynamics of how people experience, manage, and plan for the final stages of life and death (Long 2005; Seale and van der Geest 2004; Zaman et al. 2017). This body of literature has highlighted the variations as well as similarities between cultural groups with regard to their perceptions of what constitutes a good death, such as the commonly shared preference for a death without suffering. It has also shown the value that is attributed to the place, timing, and social circumstances of death (Driessen, Borgstrom and Cohn 2021; Kaufman 2005; Lemos Dekker 2018; Stonington 2012). Taken together, the aspects that are attributed to a good death in a particular cultural context reflect what people commonly value at the end of life and the societal norms regarding death and dying, and provide directives for how the end of life should be managed. As such, the good death is taken as an ethnographic object by looking at the efforts that are put into its achievement.

Ideals of a good death can thus be understood to inform a wide range of palliative care practices, discourses, and experiences. This includes, in particular, its aim to provide comfort and to relieve suffering at the end of life in psychological, social and physical domains. However, in practice this ideal can be difficult to achieve as it is linked to experiences of (bodily) decline and notions of dignity. For example, Julia Lawton’s (2000) ethnographic research in hospice wards in the UK underscores the fundamental importance of bodily deterioration, which, she suggests, has a ‘non-negotiable’ impact upon patients’ sense of self (16). Lawton highlights significant disparities between the ideology of palliative care and what she calls the bodily realities of degeneration and dying. She shows that the dying process in many cases does not conform to normative goals of a calm, pain-free, and dignified ‘good death’, and suggests that the ideological underpinnings of palliative care may offer little room for deaths that do involve pain and distress.

Furthermore, as researchers in anthropology and related disciplines have demonstrated, the place of death plays an important role in the perception of a good death. In many cultures, the home is seen as the ideal place of death, while the clinical space of the hospital is often disfavoured. Nevertheless, it is quite common for people to be hospitalised as part of care provided at the end of life. Similarly, nursing homes and long-term care institutions may not be regarded as ideal places for dying, and yet are common places of death. Hence, a discrepancy may occur between the actual and preferred place of death (Kaufman 2005; Stonington 2020; Visser 2019). Addressing these concerns, palliative care institutions and staff, the ethnographic record shows, often put great effort into creating a ‘homely’ atmosphere, a place that is familiar to patients and their relatives (Pasveer 2020; Lemos Dekker and Pols 2020). For example, Annelieke Driessen, Erica Borgstrom, and Simon Cohn (2021) describe the efforts of palliative care teams in a UK hospital to create a familiar, personal, and meaningful space for the dying person in the institutional environment, in order to make it suitable for dying—a practice the authors call ‘placing work’. Following Scott Stonington’s (2012, 2020) research in northern Thailand, home and hospital may be understood as ‘ethical locations’, as each place may hold different ethical frameworks through which death and dying are managed and valued. Stonington discusses what he calls ‘choreographing a good death,’ which refers to the strategies through which people manage the end of life. This involves planning and improvisation so as to influence the place and timing of death, whereby families make use of, and navigate, biomedical systems as well as local and communal practices of approaching death. Stonington (2020: 1-8) describes an instance of a dying person who was brought into the hospital so as to make sure they would receive all viable treatment, but was finally hurried back home to die to ensure their death would happen in the ‘right place’, reflecting ideas of the home as a moral space that would ensure the process of rebirth.

Likewise, anthropologists have demonstrated that palliative care is concerned with the timing and duration of the dying process. In her seminal ethnography, …And a time to die: how American hospitals shape the end of life (2005), Sharon Kaufman discusses how the medical bureaucratic system of hospitals in the US has become increasingly focused on the timing of death. In particular, decision-making at the end of life, such as decisions to continue or withdraw treatment, are concerned with postponing or allowing death, and can thus be seen as an attempt at exerting control over when death occurs. While her focus is on dying in hospitals in general, she notes that palliative care is integrated into hospitals as one form of end-of-life medical practice through which such questions of timing are negotiated. Although the moment of death is in many cases very difficult to predict, palliative care seeks to understand and gain control of time at the end of life. Accordingly, advance care planning (ACP) is, especially in Western contexts, often an explicit aspect of palliative care. ACP is often used in institutional care settings as a process through which patients, often in consultation with medical professionals and family members, establish their wishes and preferences to inform caregiving at later stages. While ACP in palliative care usually involves directives regarding dying and death, it may also include medical as well as psychosocial preferences in long-term care more generally. Palliative care, then, through its various tools and ACP, operates along the idea that anticipating care needs, and preparing for illness trajectories, will improve caregiving. More fundamentally, with this focus on timing, palliative care further channels the idea that an anticipated death is a controlled, and thus ‘good’, death.

This striving towards a good death is both implicitly and explicitly incorporated in the various models, tools, and practices of palliative care. Anthropological inquiry into such tools has shown that they may seek to coordinate caregiving and to transfer palliative care values in a standardised manner. Together with Erica Borgstrom, my work (Borgstrom and Lemos Dekker 2022) examines the Liverpool Care Pathway (LCP) as a tool that seeks to shape the dying process in accordance with ideals of what a good death is. The LCP is a document that is used to mark the onset of the ‘palliative phase’ and to communicate between care professionals that caregiving should shift to a focus on comfort and the management of specific symptoms. We draw on ethnographic research in care institutions in the UK and the Netherlands, to show that the tool is used to impart moral values, to standardise practices, and to demonstrate a sense of professionalism. Moreover, this ethnographic comparison shows that the use of such tools in practice can be expected to differ significantly from their intended use, and varies between geographic and institutional settings since they require interpretation and adaptation.

Choice and medicalisation

Palliative care continues to be promoted by some as an alternative to the hegemony of biomedicine, as it shifts attention from life-prolonging treatment to well-being and comfort. Anthropological work has investigated this seeming discrepancy between care and cure. Kaufman’s (2005) research on death and dying in hospitals in the US underscores that palliative care, with its focus on comfort, is at odds with the curative focus of hospitals. This plays out in negotiations over what kinds of ‘treatment’ are recognised and funded within the hospital system, whereby Kaufman suggests that even though most people die in hospitals, these institutions were generally unable to provide the kind of death that people would prefer. Related to this, and based on fieldwork with palliative care staff in the UK, Erica Borgstrom, Simon Cohn, and Annelieke Driessen (2020) have signalled that when palliative care is framed in contradiction to curative care, patients, families, and even medical professionals may perceive it as ‘doing nothing’. The authors show that what is seen as intervention or non-intervention depends on what practices are valued in care relations, whereby ‘palliative care becomes “nothing” when a cure is posited to be the only form of success’ (2020: 209). Accordingly, a key challenge in palliative care is to convey that withholding curative treatment is no longer taken to be a medical failure, but rather reframed as viable care at the end of life.

At the same time, palliative care is not wholly antagonistic to the medicalisation of death—that is, the process through which death is framed as a medical concern and which reflects the idea that death can be managed and controlled through medical knowledge and technological possibilities (Green 2008; Howarth 2007; Kaufman 2005, 2006). Asking how hospital medicine shapes the conditions for death, Kaufman (2005) further shows that the end of life is characterised by planning and decision-making, whereby patients and their families, in consultation with medical professionals, become responsible for often difficult choices, for instance of whether or not to continue life-prolonging treatment. As such, Kaufman writes, ‘death has entered the domain of choice’ (Kaufman 2005: 326). However, in practice, patients and their families may lack the specialised knowledge necessary to make informed decisions and may be unable to oversee the illness trajectory ahead or the consequences of (advance) decisions (Kaufman 2005). In her ethnographic study of end-of-life care in England, Borgstrom (2015) unpacks the rhetoric of choice, showing that this is intimately linked to neoliberal understandings of individual autonomy. She gives an example of a man who, despite the insistence of care professionals, refused to write down whether he preferred to be cared for at home or in an institution, because he considered this to be dependent on how his wife would cope with his care. In this case, advanced decision making did not resonate well with the uncertainty of changing care needs. Problematising the notion of choice, Borgstrom thus shows that it fails to address ‘the relational, and often subtly negotiated, nature of care’ (Borgstrom 2015: 709). Devin Flaherty (2018) also sheds light on the limitations of choice by discussing a case in the US Virgin Islands, where older adults have turned to hospice care due to lacking possibilities of receiving curative treatment. Hence, she demonstrates that the ‘choice’ to enter hospice care may be less based on an acceptance of death, than on how different forms of care are covered within the health care system. While palliative care thus incorporates a responsibility to make the right choices or establish preferences in advance, as well as ideals of individual autonomy, these studies show that such notions are not always clear-cut.

Moreover, anthropologists have demonstrated that patients may be sceptical towards decision-making, as this may invoke the fear of being unable to undo decisions or of relinquishing control (Borgstrom 2015; Zivkovic 2018). For Beverly McNamara (2004), the increased emphasis on patient autonomy and choice is at odds with the original conception of a good death in hospice and palliative care, which is based on open communication and acceptance of death. In her ethnographic research among Australian palliative care practitioners, she shows that the wishes of patients, which may be to extend curative treatment despite efficacy, were at times prioritised over palliative care principles. Accordingly, she suggests, palliative care in practice became reduced to medical symptom management, and puritan notions of a good death were replaced with a ‘good enough death’. In a similar manner, Marian Krawczyk (2021) has explored the experiences of palliative specialists in Canadian hospitals. She focuses on the affective labour of these professionals and shows how they organise patients’ dying trajectories, not only in terms of their biomedical and physical needs, but also with the aim of defining and ordering ‘appropriate’ emotional responses. In so doing, she argues that hospital palliative care can be seen as an affective economy in which ambiguity, negotiation, and conflict are not failures, but rather constitutive components of the institutional and professional employment of palliative care principles. Anthropologists have thus shown how ideology and practice merge, clash, and change over time, and how palliative care pushes against biomedical frameworks yet continues to operate within the limits and affordances of a medicalised system.

(Non-)disclosure at the end of life

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. This conception of palliative care, as a new way of understanding and providing care at the end of life that comes to be in dialogue with pre-existing discourses and practices, further reveals some of the normative aspects of palliative care. Anthropologists have been calling this normativity into question, viewing palliative care alongside other resources and care practices (Stonington 2020; Zaman et al. 2017).

A clear example of how principles of palliative care may clash with existing care practices is the way in which people do, or do not, talk about death and dying. Palliative care, as indicated above, involves a focus on anticipating a patient’s disease trajectory and the process of dying. A common principle is that talking openly about the end of life between patients, families, and professionals improves decision making, whereby the patient’s knowledge that they are dying is thought to foster their autonomy. Stonington’s work in Thailand shows that, in the process of choreographing death, medical professionals and family members sought to maintain the moral spirit of the dying person and maintain hope by not disclosing diagnosis and prognosis. Similarly, McNamara (2004) demonstrated in the Australian context that the ideal of open discussion and acceptance of death may not resonate with a patient’s wishes. Along these lines, several anthropologists have demonstrated that cultures of end-of-life talk vary widely, and that letting a patient know they are dying is far from being a universally accepted good practice. To the contrary, in many cases discretion—not sharing a diagnosis or prognosis with either the patient themselves or with outsiders—has been argued to be perceived as a form of care and ethical practice (Banerjee 2020; Livingston 2012; Stonington 2020). Already in 1965, and based on fieldwork in US hospitals, sociologists Barney Glaser and Anselm Strauss published their volume Awareness of dying, in which they described interactions between staff, family, and dying patients, asking who knew about the terminal nature of the patient’s condition, and what each suspected the other to know. Through the concept of ‘awareness contexts’, they showed the nuanced ways in which forms of disclosure and concealment of dying may intersect, and that whether, how, and when to talk about dying is a moral question that involves professional ethics as well as personal values and experiences.

Dwaipayan Banerjee (2020) discusses similar dynamics of speech and concealment, or disclosure and discretion, as crucial aspects of the social relations that are formed and reshaped around life-threatening illness in his ethnographic research with an NGO that provides palliative care to cancer patients in Delhi. Giving a prognosis and a diagnosis of, in this case, cancer, can open up certain possibilities, including access to palliative care. However, it can also foreclose others, as it may result in stigmatisation and a loss of livelihood. In one example, Banerjee describes how the NGO deliberately parked their vans at a distance from the home of the patients they visited so they would not be seen by neighbours, with the aim of preventing stigmatisation of the patient. Such an exercise of discretion reflects a broader set of practices, in which patients, families, and professionals would avoid explicitly talking about cancer, the ineffectiveness of further treatment, or the prognosis of dying. Banerjee suggests that ‘knowing what not to say allowed for them to continue to live in the present, without compromising all hope of the future’ (2020: 41), thus showing the potentiality and ethical concern that may be enveloped in acts of non-disclosure.

Conclusion

Since its early development in the UK and US, palliative care has been taken up by global institutions such as the WHO and has been implemented in various cultural and socioeconomic settings. Hence, anthropologists have observed how palliative care comes to relate to existing end-of-life care practices, showing the diversity with which local practitioners and care recipients give shape to this new care paradigm. From these studies, palliative care emerges as a field of knowledge and practice that draws attention to the needs of dying and chronically ill patients and their networks. Often through the efforts of staff, palliative care has been carving a space for a particular focus on the relief of suffering within hospitals and care institutions. Palliative care, then, is not a single, clearly bounded idea, but a concept that is on the move. In many places, palliative care is relatively new, being advocated by a diverse group of medical professionals, and only gradually being embedded in health care policies. By looking in detail at how medical professionals communicate with patients and families about illness and the end of life, and the ways in which families among themselves do, or do not speak about this, anthropologists have been able to demonstrate that there are different ways of dealing with diagnosis and prognosis, and that what people find important at the end of life differs across cultural contexts. Accordingly, not only do care practices change in dialogue with this new approach, but also the concept itself is bound to be adapted.

Acknowledgements

The author would like to thank her colleagues in the Globalizing Palliative Care team, Dr. Annemarie Samuels, Hanum Atikasari, and Shajeela Shawkat, for their insightful comments on earlier versions of this text. She is grateful for the support of the previous editors of the Cambridge Encyclopedia of Anthropology and the current editors of the Open Encyclopedia of Anthropology, as well as for the insightful and supportive comments from the anonymous reviewers. This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 851437).

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Samuels, Annemarie, and Natashe Lemos Dekker. 2023. “Palliative care practices and policies in diverse socio-cultural contexts: aims and framework of the ERC globalizing palliative care comparative ethnographic study.” Palliative Care & Social Practice 17. https://doi.org/10.1177/26323524231198546.

Seale, Clive, and Sjaak van der Geest. 2004. “Good and bad death: Introduction.” Social Science & Medicine 58: 883–5.

Seymour, Jane. 2012. “Looking back, looking forward: The evolution of palliative and end-of-life care in England.” Mortality 17, no. 1: 1–17. https://doi.org/10.1080/13576275.2012.651843.

Sisk, Bryan, and Justin N. Baker. 2019. “The underappreciated influence of Elisabeth Kübler-Ross on the development of palliative care for children.” The American Journal of Bioethics 19, no. 12: 70–2. https://doi.org/10.1080/15265161.2019.1674411.

Souza, Margaret, Erica Borgstrom and Tanya Zivkovic. 2021. “Rethinking end of life care: Attending to care, language, and emotions.” Social Science and Medicine 291. https://doi.org/10.1016/j.socscimed.2021.114612.

Stonington, Scott D. 2012. “On ethical locations: The good death in Thailand, where ethics sit in places.” Social Science & Medicine 75: 836–44.

———. 2020. The spirit ambulance: Choreographing the end of life in Thailand. Oakland: University of California Press.

Visser, Renske. 2019. “Going beyond the dwelling: Challenging the meaning of home at the end of life.” Anthropology & Aging 40, no. 1: 5–10.

Visser, Renske, Erica Borgstrom and Richard Holti. 2020. “The overlap between geriatric medicine and palliative care: A scoping literature review.” Journal of Applied Gerontology 40, no. 4: 1–10. https://doi.org/10.1177/0733464820902303.

World Health Organization. 1990. Cancer pain relief and palliative care: Report of a WHO expert committee. Geneva: World Health Organization.

———. 2002. National cancer control programmes: Policies and managerial guidelines, 2nd ed. Geneva: World Health Organization.

Zaman, Shahaduz, Hamilton Inbadas, Alexander Whitelaw and David Clark. 2017. “Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’.” Social Science & Medicine 172: 72–9

Zivkovic, Tanya. 2018. “Forecasting and foreclosing futures: The temporal dissonance of advance care directives.” Social Science & Medicine 215: 16–22.

Note on contributor

Natashe Lemos Dekker is a postdoctoral researcher at the Institute of Cultural Anthropology and Development Sociology at Leiden University. Her research focuses on death, dying, and end-of-life care, and dynamics of time and future-making in The Netherlands and Brazil. She was awarded her PhD from the University of Amsterdam and has published in the Journal of the Royal Anthropological Institute, Death Studies, and BMC Palliative Care, among others. She is a board member of the Medical Anthropology Europe Network (MAE-EASA).

Dr. Natashe Lemos Dekker, Institute of Cultural Anthropology and Development Sociology, Leiden University, Wassenaarseweg 52, 2333 AK Leiden, the Netherlands. N.Lemos.Dekker@fsw.leidenuniv.nl

ORCID: 0000-0001-5523-4523

[1] Within the field of palliative care, increasing attention is paid to diversity and inclusion. For example, the theme of the 2023 EAPC World Congress was “Equity and Diversity”. https://eapccongress.eu/2023/. Accessed 29 September 2023.

[2] World Health Organization. 2020. “Palliative care.” https://www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 2 November 2021.

Editor:

Riddhi Bhandari

Death

Felix Stein — Mon, 23 Jul 2018 12:14:40 +0000

Bob Simpson

Durham University

Initially published 23 Jul 2018

http://doi.org/10.29164/18death

Abstract:

The variety of ways in which death has been handled in human societies has been a source of much scholarly fascination. In this brief overview, anthropological approaches to the study of death are identified and explained. The emphasis is on death as a social event rather than the mere cessation of bodily functions. The piece describes classical anthropological approaches to death rituals and specifically as these are found in the work of Robert Hertz. Consideration is then given to the transformation of death and the way that mortuary practices have changed over time. In these changes can be seen the way that the lives of the dead are conceived in relation to those who are left behind. Contemporary examples of this relationship are drawn from biomedicine and the practice of organ transplantation and from instances where those killed in political violence are exhumed. The piece ends with a brief reflection on the future of the afterlife.

Introduction

Mortal immortals, immortal mortals,

Living each other’s death and dying each other’s life.

Fragment 46, Heraclitus (2001)

We are all going to die! In physiological terms the deaths that all will die will be broadly similar, in the sense that either suddenly and unexpectedly or maybe over a long period of time, the systems that keep us active and sentient will cease to function. However, throughout the world, people make important distinctions between a body that has expired and a dead person; that is, as someone who is connected to others through complex social relations which bring into question any simple notion of a finite ending. Complex and varied imaginaries can carry the dead person beyond any simple cessation of bodily functions. In other words, there is no easy way of separating the facts of death from those of life; they come all-of-a-piece.^[1]

Heraclitus, the pre-Socratic thinker, captured the conundrum well in the famous aphorism with which this piece begins: the living and the dead are never far apart. This entanglement led the philosopher Hans Jonas to characterise death as an archetypal human problem (Jonas 2001: 8). From the earliest glimmerings of sentience and self-reflection, evident in what he refers to as ‘panvitalism’,[2] humans had also to make sense of the plain facts of senescence. Where did the person go? Western philosophical approaches to this question have tended to treat death as an abstract totality. As Buckingham argues, death is the point at which philosophers are most likely to think outside of time and history (Buckingham 2013: 21). Heidegger, for example, doesn’t see the person as going anywhere. Death is final and non-relational and the challenge is to confront this truth in the quest for existential authenticity (Heidegger 1962). Being in the world (Dasein) is only fully realised when death and finitude are faced. In contrast, the question ‘where did the person go’ has been answered in different ways across time and according to different ways of life. It is this variation that anthropologists studying death and mortuary practices have tried to capture and make sense of. Anthropological interest is thus not so much in the abstract death that all will die but in the socially and metaphysically distinct circumstances in which each death actually occurs. In other words, death is not merely a biological event but is, as we will go on to see, a profoundly social, cultural, and political one.

People might experience their own deaths up to a point. There might be idioms in which to contemplate death and compelling reasons for doing so. For example, Buddhists in Sri Lanka are encouraged to cultivate ‘mindfulness of death’ (maranasañña) which, as Langer (2007: 53) suggests, is aimed at ‘the final liberation’ and disengagement from society. In a very different setting, Irvine takes us with great insight into the thoughts and feelings that people living with HIV/AIDS have as they approach death (Irvine 2016). Similarly, Das and Han question any simple symmetry between death and dying but rather seek to understand the ways in which death features as part of day to day life and, indeed, the ways in which life and death have what they refer to as an ‘intimacy’ (Das & Han 2016: 623). The contributors to their collection show how, even in the most dire of circumstances, people strive ‘to die well’ (624). However, in this brief introduction to the topic of death, the focus is not so much on the problem that death poses for the dying and the dead but rather the problem this poses for those who are left behind.

Here, attention shifts to those who are in a primary relationship with the dead – mothers, fathers, sons, daughters, husbands, wives, brothers and sisters – whose responsibility it is to dispose of their dead and to manage the ending of mortal attachments and the loss and grief that this brings. It also encompasses wider family and community relationships as well as the rather more impersonal bureaucracies of the state and its responsibilities for categorising and disposing of the dead. But it is not only that significant social networks are activated by a death. A substantial literature in anthropology demonstrates how the cessation of life is a point at which distinctive, and often expert, routines are put into practice to ensure that, for the living as well as the dead, the corpse undergoes a meaningful transition to an afterlife, a re-birth, a place of memoriam. The list of ways in which bodies might be disposed of to the satisfaction of the living (and the dying) is long. It encompasses preparing the dead by washing, shaving, dressing, and ritually disposing of the corpse through burial, cremation, and other funerary rites. Encounters with ghosts, spirits, and ancestors all attest to the ways in which the dead have influence and agency in the worlds of the living. Photographs, tombstones, heirlooms, and archives might similarly give death immanence in the midst of life. This theme is currently being carried forward in novel ways with the advent of information and communication technologies (Arnold et al. 2018). People the world over are, as Heraclitus put it, ‘living each other’s death’. Desjarlais goes so far as to argue that there is a deep-felt need to bring something into existence at the very moment that a person ceases to be (Desjarlais 2016: 654-5). Describing death and dying among the Yolmo of Nepal, he sees their responses to death as a creative act of making a new reality. Among the Yolmo, the ritual processes that accompany the death of a person set in motion a re-configuration of relations between persons, objects, and memories.^[3]It is the attempt to make sense of this mixing of social relationships, ritual practices, and metaphysical beliefs as it is found in different societies that has made the study of death such an engaging and intellectually challenging field within anthropology.

Hertz: death as transformation

The study of death in anthropology is one that has a long and important pedigree. Through the study of classical mythologies, James Frazer and Johan Jakob Bachofen attempted to decipher the rituals and symbols of ancient mortuary practice. Consistent with the intellectual preoccupations of the second half of the nineteenth century, their interest was in origins, evolution, and the traces and survivals they believed they could see in the world around them. In an important turn away from the classically-oriented collages of mortuary practices that that these approaches tended to produce, Robert Hertz laid important foundations for the anthropological study of death as a distinct field (Hertz 1907, Parkin 1996). Hertz was a member of the Année Sociologique group working under Emile Durkheim, Marcel Mauss, and others. In keeping with Durkheim’s overall project, their main achievement was to transform a predominantly theological approach to the study of religion into a fundamentally sociological one. In the case of Hertz, this entailed showing how individual feelings and sentiments evident at the death of a member of society were made sense of, and indeed shaped by, shared and durable patterns of beliefs, values, and ideas. These were Durkheim’s ‘collective representations’^[4]and Hertz saw them as evident and consequential in the orchestration of ritual, symbol, and myth on the occasion of a death.

In an early and important exercise in comparative anthropology, Hertz analysed detailed ethnographic accounts of burial practices in Borneo and Indonesia (Metcalf & Huntington 1991: 34). In these rites, known as secondary burials, the corpse is ceremonially separated from the living and kept for an ‘intermediary period’ in the earth or in special pots. In his attempt to understand this process, Hertz drew inspiration from the French ethnographer and folklorist Arnold Van Gennep (1873 -1957). Van Gennep had earlier succeeded in gathering a wide range of materials on rituals held to mark important transitions such as births, marriage, and deaths (Van Gennep 1960). From these he was able to extract commonalities and identify what he referred to as schema. He described these in an important work called Les rites de passage in which he showed how transitions commonly feature acts which separate and then marginalise ritual participants before re-aggregating them back into society (Hockey 2002). In his work on death, Hertz was particularly interested in what Van Gennep had referred to as the liminal phase of rites of passage (Van Gennep 1960, also see Turner 1969 and Berger & Kroesen 2016). In this phase of the ritual, the corpse, the living, and the souls of the dead are in an ambiguous and dangerous relationship. The corpse rots and, over time, loses its mortal appearance and becomes an object of dread. Eventually, all that is ‘wet’ (flesh) becomes ‘dry’ (bones). In the final stages of the rite, the corpse, amidst great celebration, is moved to a more permanent place of keeping; that is, the dead are moved irreversibly from the world of the living to join the souls of the dead: they have become ancestors. As Hertz put it, the purpose of funerary rites is ‘to make a material object or living being pass from this world to the next; to free or create the soul, it must be destroyed […] As the visible object vanishes it is reconstructed in the beyond, transformed to a greater or lesser degree’ (Hertz 1960: 46).

In this process of moving the dead out of the world of the living, Hertz identifies a very important dramatis personae. First, there is what might be thought of as a metaphysical dimension to mortuary practice overseen by those concerned with ensuring that the soul – or what it is that is believed to abide beyond death – is safely conducted to the afterlife. Second, there are those who live on and in various ways feel their loss, which introduces an important emotional dimension to Hertz’s analysis. Questions of attachment and loss and how these are collectively managed are seen as a key function of the ritual process. Third, there is the corpse and its eventual interment which signifies the ultimate extinction of the social person. The essential Durkheimian point in Hertz’s analysis is that society is transcendent and, whilst an individual death is often portrayed as a dangerous tear in the ordered fabric of society, it is one that its members can repair. As Hertz himself put it: ‘the collective consciousness does not believe in the necessity of death, so it refuses to consider it irrevocable […] the last word must remain with life’ (1960: 78).

The influence of Durkheim is strong in Hertz’s work and often leads to a problematic over-reification and -personification of society: can society really have power and agency in the way that they presume? Notwithstanding this important criticism, Hertz’s work has continued to be an important stepping-off point for scholars interested in the topic of death. One reason for this sustained interest is that his work brought diverse and widely observed phenomena – mortuary rituals, fear of the dead, impurity of the corpse, and the performance of mourning – into a single analytical framework. Davies points out how focus on the fate of the corpse within this schema was a precursor of the more recent interest in materialization and embodiment in religious practice (Davies 2000). Similarly, Hertz’s interest in the powerful emotions that are unleashed in bereavement, or what he referred to as ‘internal partings’ (Hertz 1960: 81), anticipated later interest in ritual and emotion and the relationship between inner states and outward actions. Finally, Hertz’s work was also an important precursor of work which focused on themes of birth and regeneration that are commonly found in mortuary rites (for example, Bloch & Parry 1982). In many traditions, the symbolism of tombs and wombs are never far apart. Death is an ending – we are indeed all going to die – but it is also a moment of transformation, potentiality, and beginning. The work of ritual officiants and the participants they assemble enable the dead to be resurrected and regenerated in ways that are meaningful to those that are left behind.

The transformation of death

Although originating in a tribal society in Indonesia, Hertz’s work has provided a number of important and durable themes that are often referred to in the anthropological study of death. In particular, his work provides a useful framework for understanding death as the occasion for action that is both collective and transformative. Where it is less effective is in understanding the ways in which such processes change over time and how conceptualizations of death itself are transformed. In what follows I provide two examples of such transformations.

The first is taken from Piers Vitebsky’s ethnographic work among the Sora, a tribal group found in the state of Orissa in the east of central India. Based on material collected in the 1970s and 80s, he produced an important monograph, Dialogues with the dead: the discussion of mortality among the Sora of eastern India’ (1993). This work details how Sora people are brought into connection with their deceased relatives through the agency of shamans. The shamans are orchestrators of the memories of the dead (sonum), and by way of the ‘dialogues’ they initiate, the living and dead communicate over matters such as illness and its causes, the emotions triggered by attachment and loss, and how to deal with the jealousies that come with managing inheritance and property. A dominant theme of the book is that death is not the negation of life but rather a matter of its transformation and continuity, albeit with relatives who now dwell in the underworld along with all the other spirits of the dead.

Vitebsky returned to the Sora several decades later and reported on their present circumstances. In his book, Living without the dead: loss and redemption in a jungle cosmos (Vitebsky 2017), he describes how in the years since his original sojourn among the Sora, there had been a remarkable transformation. Young people had turned away from their traditional cosmology and the beliefs that upheld it. In response to the incentives and encouragements of evangelical Christians and fundamentalist Hindus, new routes to education, social mobility, and respectability were beckoning. Yet embrace of the new religions came at a cost. Becoming a Christian meant that there was no place for the dead in the lives of the living. After death, good people went to heaven rather an underworld from whence they could continue speaking to the living. The shamans, who had routinely put the living into contact with their recently dead relatives, were replaced with male priests whose job it was to construct and maintain a very different relationship with the afterlife. For many Sora, this silencing of the dead was a source of profound sadness and anxiety: how could they grieve without the reassurances, and indeed the wisdom, of the dead? What would it be like to die and not be spoken to by one’s children? Whilst the Sora might have been gaining access to new modes of redemption and eternal life, an entire register of emotional and existential life was being erased in doing so. Vitebsky’s account highlights the deep and distressing existential rupture which opens as people shift between radically different ways of understanding death and the place of the dead in their social world.

The second examples are taken from the works of Geoffrey Gorer and David Cannadine and their accounts of how world wars in Europe changed ideas of death and the way that people perceived their relationships with the dead. In his speculations on the impact of war on public expressions of grief, Gorer suggests that extensive losses of relatives on the battlefield led to very visible expressions of grief and mourning. Most notably, widows would wear black for prescribed periods of mourning. As the body count grew on the battlefield, the visibility of ‘widow’s weeds’ on the streets at home increased accordingly. Gorer argued that, at the time, this was perceived as bad for morale and the war effort; consequently, such public displays were discouraged by the British establishment. This, he suggested, played a key role in making death the occasion for private rather than publicly expressed grief. A similar argument was made by the historian David Cannadine writing about the aftermath of the First World War (Cannadine 1981). The level of loss across Britain (and indeed the whole of Europe) following the First World War is difficult to comprehend. Cannadine argued that such was the swell of raw grief in the aftermath of the war that accepted routines were, in a sense, overwhelmed. In Durkheim’s terms, the tear in the social fabric was simply too enormous to be repaired by resorting to existing practices of memorialization. With the absence of bodies over which to mourn, this was a time in Britain when there was a significant rise in spiritualism, spiritualist churches, and the practice of holding séances in the hope of having ‘dialogues’ with the dead. In a way, the direction of travel was opposite to that described by Vitebsky for the Sora – whereas the Sora turned away from their dead as active in their lives, British mourners, with the help of spiritualists, actively sought them out. Crucially, the First World War not only changed a nation’s relationship with death but also, for a time at least, its relationship with the dead.

Although very different, what both these examples show is that death and the kinds of contact that the living might then expect to have with the dead are subject to change over time and according to circumstance. This is particularly so where change is sudden and traumatic. Phillipe Ariès, in his monumental history of death in Europe, attempted to plot such changes across a longer durée (Ariès 1974). His evidence was drawn from a variety of historical sources regarding mortuary practices, gravestones, wills, artworks, literature, and other clues as to the social life of the dead in former times. He concludes that there has been a transition over the last 1000 years from what he calls ‘tame’ death to ‘wild’ death. Tame death is used to characterise death in pre-modern Europe. It is seen as a kind of repose and one accepted as part of the natural order, and its management by family, kin, and community was consistent with this framing of death. It was an event for which the tramlines of meaning were very clearly laid down and for which appropriate preparations could be made by the living and the dying. By contrast, the wild death of modern times is portrayed as a troubling intrusion for the living and one for which collective and shared routines are unclear. In Ariès’ work, Europe becomes the arena for a particularly ‘modern’ kind of death; that is, one seen as an individualised site of resistance rather than one of collective acceptance. Medical rather than spiritual interventions at the deathbed are likely to be the norm in managing this kind of death (Illich 1974, Porter 1989). To varying degrees across western societies, death had become the object of taboo. Privatised, medicalised and secularised, it was seen as sequestered away from family and kin and with no prospect of a happy meeting in an afterlife. To get to this point, Ariès makes some broad sweeps across time and space. However, what is lacking in this account of ‘modern’ death is an ethnographic specificity which captures how death is actually managed and just what it means for those involved. In the next section, I turn to some of the more recent anthropological work on death. I briefly explore three themes: death and contemporary biomedicine; new immortalities; and thanato-politics.

Death and contemporary biomedicine

Franklin and Lock explore the question of how, in modern medical and bio-sciences, the conundrum of life, personhood, and cessation is dealt with at cellular, bodily, and species levels (Franklin & Lock 2003). The linkage with earlier insights into the symmetry between death and regeneration remains a potent theme throughout their account. Yet, the distinctions between culture/life and nature/death that run through earlier anthropological accounts of death are held up for critical scrutiny. These analytical distinctions may no longer be quite so useful in a world where new technologies render biology an object which is not merely given but made. Novel distinctions are now made across the former binary and new fields open up to ethnographic enquiry as death becomes differently visible. Work carried out in regenerative medicine, tissue engineering, and genetic modification is a case in point. These technologies have profound implications for life and also for death, in that ideas of body, personhood, and value are increasingly inflected with those drawn from the world of technology, markets, and capital.

Margaret Lock, for example, gives an account of the emergence of the concept of ‘brain death’ and the increasing possibilities for a misalignment of a social death and biological one (Lock 2003). Within the biomedical world, biological death was hitherto thought of as a self-evident and clear boundary between life and death, and marked by indicators such as the cessation of pulse and respiration. However, the possibilities for technological intervention at the end of life mean that failing bodily functions can be overridden mechanically. As a result, attention has now shifted to other places in which vitality might be located, specifically: the brain, the display of neocortical activity and, by inference, the presence of consciousness (also cf. Kaufmann 2000). The idea of a ‘persistent vegetative state’ (PVS) sans sentience and intentionality but with continuing blood flow and respiration gives rise to some complex ethical and philosophical reflections. How are we to understand the relationship between life and death at a point where this fundamental binary appears to collapse? As Lock shows in an illuminating comparison between approaches to this problem in the US and Japan, the meaning of death is historically and culturally situated and deeply contested (Lock 2002). Whereas in the US, consciousness and the location of personhood have been moved up into the brain, so to speak, in Japan, life is seen as running through every part of the body and cannot be so easily partitioned off. As a consequence, criteria that were put in place in the US and Europe to help make sense of PVS were not compatible with Japanese ideas about the locus of vitality and how legitimate organ retrieval could be distinguished from first degree murder (Lock 2002). One important consequence of this different reading of brain-death in Japan was that organ transplantation was for many years severely restricted. The inverse corollary of this reading of the unconscious-but-still-living body was that in western countries ‘brain death’ enabled access to a new source of large organs for transplant (Sharp 2007, 2014). Hearts, liver lobes, kidneys, lungs, and cornea are just some of the organs and tissues that are now ex-plantable from the body of a ‘brain dead’ person. Indeed, there is a significant and widening repertoire of ways in which the organs and tissues of one body might find use in another. If we expand the use of cadaveric tissue beyond the therapeutic, to encompass educational and research purposes, then there is now little that cannot be meaningfully recovered from a body at the point of death or shortly thereafter. Amidst shortages of organs and tissues for these secondary uses, death as closure and finality begins to give way to death as opportunity and resource. This is an important shift. It signals some profound changes in the way that death is made meaningful in a growing number of contexts.

New immortalities

Secularization has been an important theme in studies of death in contemporary societies. This is often taken to mean the stripping away of the religious trappings of death as they featured in earlier times and other places. In recent work I have argued that secularization does not make for any simple nihilism but that new kinds of meaning making emerge which are of ethnographic note, particularly when it comes to post-mortem tissue and body donation (Simpson & Douglas-Jones 2017; see also Asad 2016). Indeed, in answering the important question posed by Cannell (2010) – ‘what does death look like without religion?’ – the possibilities afforded by the modern imaginaries of medicine, education, and research come into view as novel vehicles for immortality. Moral and social sensibilities are tapped in donor campaigns which play on the rhetoric of the ‘gift’ to elicit commitments to donate (Simpson 2011). The corporeal rhetorics of such campaigns offer the public glimpses of how the living might imagine their own mortal transformation as having value and perhaps a presence beyond the finality of death (see, for example, Hallam 2017 for an account of whole body donation for medical education).

One way in which these secularised framings of death, transformation, and continuity are becoming more evident is in the growing expectation that individuals will take responsibility for their own deaths by way of pledges, donor cards, living wills, and end of life directives as these relate to tissue and whole body donation. These pre-mortem acts carry with them glimpses of post-mortem sociality and the responsibility that others will have after a person’s death. Even more compelling are the ways in which transplant technologies mean that parts might ‘live on’ in spite of, or outside of, the body. New kinds of kinship connections come into existence as parts of dead relatives are assimilated into the bodies of strangers (Kaufman, Russ, & Shim 2006; Sharp 2006, 2007). In one such case, the newspaper headline read ‘Bride Is Walked Down Aisle by the Man Who Got Her Father’s Donated Heart’.^[5]As people imagine themselves living on in one another in this way, possibilities open up for how grief might be expressed and managed. In Durkheimian terms, cadaveric donation becomes once again an occasion for the repair of the social fabric which death has opened up. Relatives and friends might gain solace from their ability to transform a death in their midst into something productive, such as the saving of another’s life or the anatomical training of a medical student.

Thanato-politics

Operating at a rather different scale, the French philosopher and historian Michel Foucault attempted to map the changing relationship between death and the state. Central to his thesis was the emergence of biopolitics, a term he used to capture the ways in which knowledge and power translate into regimes for the management of human life and well-being. As part of this thesis, Foucault also identified how, in extremis, biopolitics encompasses the administration of death, or what he referred to as the ‘thanato-political’ (Foucault 1976). The most absolute form of thanato-politics was seen in the quest for racial hygiene perpetrated under National Socialism in the 1930s. Under a totalitarian regime, those who were deemed to threaten this project, either by reason of their ethnicity or political views, were systematically incarcerated and reduced to a state of ‘bare life’ (Agamben 1995). This loss of citizenship and identity was often followed by what we might think of as a ‘bare’ death: an unmarked and uncelebrated desecration of the person. The use of terror and violence by the state in the name security and stability did not, however, start with National Socialism in Europe and nor did it end with it).^[6]The misuse of state power in relation to minorities, the marginalised, and the displaced constitutes an important theme in the anthropology of death.

One anthropological response to the use of state violence has been attempts to recover ethnographically the ways in which death is managed and given meaning by those who are left behind. Here we are dealing with what Hertz referred to as inauspicious or ‘bad’ deaths (Hertz 1960 [1907]). These are deaths in which survivors are often unable to carry out appropriate rituals of disposal and mourning and are left in despair at the circumstances of the loss and separation they have experienced. Understanding the specificities of what happens under the heading of thanato-politics has generated anthropological interest in topics such as searches for those who have disappeared during conflict or political violence, exhumations of the disappeared, and the use of forensic science and genetics in enabling the living to make connections with remains of the dead. Examples of recent work in this area include Francisco Ferrándiz’s account of exhumations of those summarily executed by the Franco regime at the end of the Spanish civil war. In this work he documents some of the ‘technical, political and legal skirmishes’ that arise as the present government confronts the skeletal remains of those exhumed from mass graves (2013: 44). In a similar vein, Isias Rojas Perez’s account of relatives’ search for missing victims of the counter-insurgency violence in the Highlands of Peru documents the efforts of relatives to identify and seek recognition for victims of political violence. Here the emphasis is on how remains figure in emerging narratives of memorialization and possible reconciliation (2017). Covering similar issues, Ernesto Schwartz-Marin and Arely Cruz-Santiago’s participatory research on ‘citizen forensics’ shows how the families of the disappeared in Mexico are using DNA evidence from bodily remains to challenge state versions of atrocity (2016). Verdery traces the ‘the political lives of dead bodies’ in Eastern Europe in a different direction. In her study of post-socialist Eastern Europe she describes how the bodies of now dead leaders, artists, and poets become part of symbolic efforts to configure state politics after communism (2000). Similarly, Heonik Kwon describes how, in post-conflict Vietnam, beliefs about the wandering souls of the war dead continue to animate contemporary culture and politics (2008). Describing responses to other kinds of ‘bad’ death, Sarah Green has written about how the bodies of unidentified migrants are treated by the Greek authorities on whose beaches they wash up (2012). In a similar vein, Claudia Merli and Trudi Buck have described the different treatment according to nationality of bodies identified in the aftermath of the tsunami which hit Thailand in 2005 (2015). In each of these ethnographies, the imperatives of grief, memorialization, and immortalization are seen to work strongly to prevent a ‘bad’ death becoming a ‘bare’ death.

Afterword/afterlife

In this brief excursion into the anthropology of death, two powerfully recurrent themes stand out. The first is that the ways humans make sense of death are always deeply entangled with the question of how they live. The second is that the work of the creative imagination works to transform death into a celebratory assertion of continuities of one kind or another. Such continuities are often conceived through the imagery of rebirth, regeneration, and reincarnation. These are powerful planks on which the experience and sense-making of death have been built. But what if these planks were removed? What if the endless circularity that Heraclitus’ aphorism conveyed at the outset was catastrophically ruptured? Scheffler, in an important essay entitled ‘Death and the afterlife’ (2013) asks just such a question. He does this not from any metaphysical standpoint but from the very obvious and deep-rooted idea that as humans we live with the idea of a future that extends beyond our own mortal span. When I die, I assume that the species will not die with me. There will be others that outlive me, and yet others that will follow after them. These future people will in turn become ancestors. Scheffler, however, asks what life would be like if this assumption did not hold and we knew this to be the case. Let’s say that, in these times of anthropocenic anxiety, our failure to manage the environment upon which we depend means that we come to know definitively that there would be no one to follow. What would happen to ideas of life and death if we, as humans, had to confront the imminent extinction of our species? Anomie or a frantic affirmation of people and things that we value? A dystopian fragmentation of social and cultural orders or a celebratory assertion of a deeply human sociality? One would hope that we are never in a position to see this philosopher’s thought experiment concluded. Rather, we should perhaps see it as but another demonstration of how much we can learn about life from our reflections upon death and the deep call to compassion that lies at the heart of Heraclitus’s aphorism.

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Note on contributor

Bob Simpson is a professor of Anthropology at Durham University. He has written widely on the anthropology of bioethics, biomedicine, and biotechnologies. His current research interests centre on tissue economies and moralities as these relate to organs, gametes, and embryos. One of the main themes he works on is the procurement and use of cadaveric tissue. As well as numerous publications on this topic he also he convenes the New Immortalities network which brings together scholars interested in this topic. His work has also explored the encounter between challenging technological developments and local systems of values and beliefs in South Asia. His forthcoming monograph (co-authored with Salla Sariola) is Research as development: clinical trials, collaboration and bioethics in Sri Lanka (Cornell University Press).

Prof. Bob Simpson, Department of Anthropology, Durham University, Dawson Building, Southroud, DH1 3LE Durham, United Kingdom. robert.simpson@durham.ac.uk

[1] This raises an interesting problem: the word ‘death’ refers to something out there that there is a deep compulsion to name, but in so doing it is deeply and inevitably inflected by each person’s own beliefs and values. It is the kind of word that, following Derrida, we should place ‘under erasure’. We ought really therefore not to write ofdeath, but of ~~death~~. Were I to use this convention, the erasure would serve to indicate that whilst the term is not quite up to the job we are expecting it to do, it is the best we have.

[2] The term ‘panvitalism’ refers to an elementary belief that everything in the world is alive and possessed of a life force.

[3] Desjarlais lists the objectives of Yolmo mortuary practices as follows: to make things more or less concrete or virtual; to alter or fashion the appearances of the world; to shape or change the consciousness of someone or something; to sense or perceive the world in a particular way; to shape memories; to change the form of someone or something; to teach someone something significant or lasting; to create relations between forces in the world; to alter the ways in which relations take form or proceed; to bring forth something previously dormant or hidden or germinating; to play with the forms and formations of life; to unmake something: to dissolve something or take it apart (Desjarlais 2016: 654-5).

[4] The term ‘collective representations’ features in Durkheim’s theories of religion and describes specifically how beliefs and values come to have power in society. Essential to his definition of collective representations was the fact they are external to the individual and operate autonomously and collectively.

[5] (available on-line: https://www.nytimes.com/2016/08/09/fashion/weddings/bride-is-walked-down-aisle-by-the-man-who-got-her-fathers-donated-heart.html)

[6] The idea of thanato-politics has been refined in a number ways. For example, Mbembe has developed the idea of necropolitics and the systematic and state legitimated use of lethal violence in African settings (2003). Similarly, Rojas Perez has identified what she refers to as necro-governmentality in an exploration of the way the Peruvian state has managed political disappearances (2017).