The Dying Process

Patients' Experiences of Palliative Care

Julia Lawton

• Éditeur: Routledge
• Année: 2002
• ISBN:
  9781134588664
• Édition: 1
• Sujet: Sozialwissenschaften
• Sous-sujet: Globale Entwicklungsstudien

Taking as its focus a highly emotive area of study, The Dying Process draws on the experiences of daycare and hospice patients to provide a forceful new analysis of the period of decline prior to death.Placing the bodily realities of dying very firmly centre stage and questioning the ideology central to the modern hospice movement of enabling patients to 'live until they die', Julia Lawton shows how our concept of a 'good death' is open to interpretation. Her study examines the non-negotiable effects of a patient's bodily deterioration on their sense of self and, in so doing, offers a powerful new perspective in embodiment and emotion in death and dying.A detailed and subtle ethnographic study, The Dying Process engages with a range of deeply complex and ethically contentious issues surrounding the care of dying patients in hospices and elsewhere.

1
INTRODUCTION

Introductory remarks

This book aims to substantially revise concepts of the ‘Western’ self through an analysis of empirical research on the experiences of dying patients receiving palliative care in contemporary England. There is now a proliferation of sociological and cultural studies on the ‘Western’ self and its relationship to the body (e.g. Giddens 1991; Falk 1994; Featherstone et al. 1993; Shilling 1993; Turner 1984), yet few of these explore the process by which people negotiate and understand themselves in practice in their daily lives, let alone during traumatic moments such as the period of decline and deterioration leading towards death. Through closely detailed ethnographic research, this study both contextualises these intellectual debates and challenges some of their underlying presuppositions. In particular, it focuses on concepts of the person, and the importance of certain physical capacities and boundaries for the maintenance of the ‘Western’ self. As the research described in this book reveals, many characteristics central to the ‘Western’ self only become visible after they have been lost, as it were. It is for this reason that a study of dying patients has a unique and important contribution to make to these debates.

Whilst particular attention is focused upon the ways in which patients’ experiences of self, body, space and time shift and change during the period between receiving a diagnosis of terminal disease and their eventual bed-ridden deaths, the study also highlights and explores several other related themes. One of these, rarely analysed, is the question of the ‘intersubjectivity’ and ‘intercorporeality’ of the process of dying. To look at this, the study sets patients’ experiences alongside those of family and friends, allowing an analysis of the complex ways in which patients’ deterioration affects the bodies, selves and identities of those involved with their care. This aspect of the study draws out the importance of intersubjective and intercorporeal experiences, and, in so doing, destabilises the notion that the ‘Western’ self is always and necessarily coherent, unified and self-contained within the parameters of a single body.

Moreover, the research outlined in the pages that follow highlights the difficulties of matching the modern hospice movement’s ideological goal of enabling patients to ‘live until they die’ with the realities of the ways in which many patients cared for in hospices bodily degenerate (‘rot away and die’) in practice. This disparity between the rhetorics and the realities of hospice care is not only noted through ethnographic description; it is also analysed through the context in which it occurs.

Detailed descriptions are provided of patients’ experiences at various stages in their illness and deterioration, thereby bringing the human reality of these events to the fore in the text. By combining these descriptions with broader theoretical perspectives, this study aims to give the reader both an empathetic and analytical understanding of the perspectives of ‘the dying’ and those involved with their care. One of the central and fundamentally important arguments of the book which arises from this approach is that during the course of their illness and bodily deterioration, patients may lose various aspects of their selfhood and identity which qualify them for the status of a ‘person’.¹ In other words, it is possible for a patient to die socially – that is, to enter the realms of non-personhood – prior to his or her physical cessation.² By identifying those capacities and attributes which, when lost, erode a patient’s ability to be themselves and to be seen as such by others, this study provides far reaching insights into what in fact makes a person a person within modern ‘Western’ contexts.

The focus on the centrality of the body, as a physical entity, to contemporary concepts of person and self is a key aspect to the research, and this focus, as we shall see, transcends existing literature on embodiment in a number of ways. For example, by making the ‘nonnegotiable’, deteriorating bodies of dying patients a central point of analysis, this study provides a critique of the ways in which post-modern thinkers have tended to theorise the self as operating through the construction and presentation of a ‘performative’ body. Such a theorisation, it will be shown, is often not a demonstration of the inadequacy of mind–body dualism as these authors intended, but is instead a reiteration of that very dualism. Aspects of embodiment hitherto kept in the background, such as the capacity for mobility and for corporeal ‘self-containment’, are revealed through this research to be absolutely fundamental to selfhood in modern ‘Western’ contexts. The book thus argues that a fundamental rethinking of the intellectual understanding of the relationship between the body and the self is needed.

The research begins in a day care service for patients who had received a recent diagnosis of incurable disease, and whose illness had begun to undermine their capacity to function normally. The study then moves into an inpatient hospice which caters for patients during the last stages of their illness, and was the place in which many patients finally died. Consideration is paid to the various ways in which medical advances, changing funding strategies within the NHS, and other social and political forces affected the difficult and complex decisions which surrounded the treatment and management of patients in both settings. In so doing, this study directly engages with a range of complex and ethically contentious debates which centre upon the care of dying patients in hospices and other locations.

Whilst this study was conducted in one regional location, contemporary England, it is hoped that the observations and analyses developed will have broader applications, contributing, for example, to debates on the ‘Western’ self in the ways indicated above. It is important to recognise, however, that terms such as ‘the West’ and ‘the Western person’ are inherently problematic, because anthropologists (and others) who have used – and continue to use – these stereotypes often appear to assume that ‘the West’ is an homogenous area characterised by uniform features (see Moore 1994: 131). Whilst the ‘West’ is thus perhaps more an intellectual construction than an empirical reality, such a concept will be used (with caution) in the pages that follow.³

This introductory chapter provides the necessary background for the book as a whole, and sets the context for the chapters which follow. In it, I provide an analysis of how the ‘management’ of death and dying has changed during this century, and point to the various social and cultural forces which supposedly stimulated the development of the modern hospice movement in the UK. The day care and inpatient services where I conducted fieldwork are then located, described and examined within the broader context of the hospice movement, its ideology and philosophy of care, and its development over time. This examination is followed by a description of the methods I used to collect data within day care and the hospice, together with some reflections upon the ‘typicality’ of the patients to whom I had access during the period of fieldwork. The chapter concludes by outlining the following chapters, and highlights the ways in which they relate to and connect with one another. I begin by considering the concepts of ‘person’, ‘self’ and ‘identity’, as they are used, understood and critiqued within this study.

Person, self and identity

Whilst there has been broad agreement amongst anthropologists that what constitutes and characterises ‘human beings’ is subject to cultural and historical variability (see, for example, Mauss 1985; Dumont 1985) the actual terminology used to describe and understand these ‘human beings’, as La Fontaine (1985: 124) points out, has been a matter of some confusion and debate. In light of such confusion, La Fontaine suggests that it is most fruitful to draw a distinction between what she terms the ‘individual’, defined as, ‘the mortal human being, the object of observation’ (1985: 126) on the one hand, and the ‘person’ on the other, the latter term being used ‘to refer to concepts ... which lend the object social significance’ (ibid.).⁴ Such a distinction is useful because it allows for the idea that one can be a ‘mortal human being’ without necessarily being a person, since entry into personhood requires certain culturally dictated criteria to be possessed and/or achieved. Certainly, Fortes, in his study of the Tallensi of Ghana, has argued that marriage and the birth of children were essential prerequisites for a member of that society to attain personhood, the implication being that not all members of the Tallensi were persons (Fortes 1973). In a similar manner, the observations and analyses developed within this book will suggest that in contexts such as contemporary England, adults can continue to exist as living human beings after they have lost those bodily and social attributes which allow them to be seen, and to see themselves, as persons.

Yet the separation between the ‘individual’, ‘the object of observation’ and the person has itself recently come under attack in the work of academics such as Strathern (1988). Such a distinction, Strathern argues, is inherently problematic because it contains within it the assumption that the person is always and necessarily a distinct, integrated, unified whole, contained within a singular body; a unified entity, furthermore, which can be set against a wider social whole, ‘as in our contrasting ideas about society working upon individuals and individuals shaping society’ (1988: 13). This conception, she suggests, is ethnocentric, stemming from ‘Western’ stereotypical understandings of the person, and thus cannot be assumed to exist cross-culturally; an observation which has also been echoed by Shore (1982: 133). Whilst the cross-cultural existence of the ‘individual’ has now been subjected to extensive critical scrutiny (see Chapter 3 ), this study will explore the extent to which the stereotype does, or does not, actually conform to practices and self-understandings amongst ‘Western’ persons themselves. Because we will in fact see instances wherein selfhood appears to be experienced in fluid, overlapping ways which extend beyond the parameters of an ‘individuated’ body, the term ‘individual’ will not be used extensively and unreflexively within this study.

The person of modern ‘Western’ contexts, as various academics have argued, is composed of two separate but interdependent components: an identity and a self (see, for example, Giddens 1991; Rose 1990; Morris 1994: 14). The self is one’s inner subjective being; it is an essence which, in this particular cultural and historical context, is interior to the subject/ person (Taylor 1985). Identity, on the other hand is externally dictated; it is derived from the cultural meanings and community memberships that others confer upon a societal member. In other words, identities develop both in stable roles and in the emergent situations of social interaction (Goffman 1959); identity is what is draped over participants by the social and cultural group they are in, and varies according to one’s context at any given time (see, for example, Lloyd 1993; Jackson 1996: 26). In practice, however, one’s self and one’s identity are often fundamentally entwined since, just as the ‘presentation of self’ (Goffman 1959) involves the negotiation and projection of one’s inner sense to the outside world and thus constitutes a part of one’s identity,⁵ one’s identity or identities can become, to some extent, internalised and thus part of one’s self-concept (Mead 1934). Certainly, as later observations and analyses will suggest, whilst members of contemporary ‘Western’ societies often conceive of themselves as unique and autonomous entities, such a notion of person and self is often dependent upon, and realised through, interpersonal relationships which are themselves based upon a certain level of mutual autonomy.⁶ Consequently, the modern ‘Western’ self, in the sense used in this study, involves a blending of interior and exterior (relational) components, and without these components there can be no person.

Whilst there is a substantial and internally highly varied literature outside social anthropology which traces the emergence of the modern sense of ‘Western’ personhood (see, for example, Taylor 1989; Elias 1994; Foucault 1987; Rose 1990, 1996; Lukes 1973), within the discipline itself greatest attention to this phenomenon has been paid by writers such as Mauss (1985) and Dumont (1985). Both have, in similar ways, pointed to broader cultural changes and, in particular, to the transition they see as having occurred from ‘holistic’ societies based on ascribed statuses to ‘individualistic’, achievement-based societies. With such a transition, they argue, modern ‘Western’ persons have ceased to be enmeshed within kinship structures and other political, economic and religious systems which define and constrain who and what they are: as Dumont suggests, the ‘individual’ him or herself, rather than ‘society’, has now become the ‘paramount value’ (1985: 94; see also Macfarlane 1978). With this loosening of the external moral grip of society, as both academics further observe, the person not only begins to emerge as a differentiated ‘individual’, he or she also becomes endowed with a moral value and a moral consciousness, with ‘individual rights’ and ‘self-interests’, that are separate from any social roles that are occupied (see also Lukes 1985; Morris 1994: 153). Person and self, in other words, become merged in distinctive ways, a phenomenon which explains why the two concepts can, and often are, used interchangeably in the modern ‘West’.⁷ Indeed, as Mauss notes: ‘the “person” (personne) [now] equals the “self” (moi); the “self” (moi) equals consciousness, and is its primordial category’ (1985: 21, original emphasis). Such a conception of the ‘Western’ person/self, as Rose’s study neatly sums up, is one which is perceived in academic discourse as being ‘coherent, bounded, individualised, intentional, the locus of thought, action and belief, the origin of its own actions, the beneficiary of a unique biography’ (1996: 3).

Yet, as I indicated above, one of the objectives of this book is to use the observations and analyses developed to address broader intellectual concerns, in particular to provide a critique of the ways in which concepts of the ‘Western’ person/self have been used and theorised within the academic literature. At a time when anthropologists are more frequently applying their ethnographic skills ‘at home’ (for example, Strathern 1992a, 1992b; La Fontaine 1996; Franklin 1997), their observations are beginning to reveal a much more complex picture of ‘Western’ personhood than has hitherto been assumed. Indeed, Bloch has recently observed that, ‘the individualism of the west needs to be greatly qualified. It is more self description than a sociological finding and the fragility of its ideology emerges at every turn’ (1988: 28).

The distinction drawn between ‘self description’ and ‘sociological (read: empirical) finding’ is a crucial one because it highlights the problems of assuming that the theoretical models of the ‘Western’ person/ self derived from ‘serious discourse’ (B. Morris 1991: 271) and enshrined in legislation (Moore 1994: 35) are an accurate reflection of the everyday experiences and practices. By exploring the ways in which selfhood is lived and lost in practice in contemporary England, this study reveals a somewhat complex and internally varied picture: a picture which suggests that no simple distinction can be drawn between ‘high theory’ on the one hand and ‘folk’ understandings on the other.⁸ On the contrary, it appears that the ways in which ordinary people in England perceive and evaluate themselves and others are shaped by a conceptual framework which is composed of certain strands of both (see Moore 1994: 35). Consequently, whilst there are some contexts in which contemporary English conceptions of person and self seem to conform to what Battaglia has termed a ‘rhetorics of individuality’ (1995: 3), in other contexts such a stereotype will be shown to be problematic.

One of the central problems with most theoretical models, as this study will highlight, is that they are premised upon an essentially ‘disembodied’ conception of the person/self. What remains implicit in such models – but will be made absolutely explicit in this work – is that in order for selfhood to be realised and maintained in contexts such as contemporary England, certain specific bodily capacities and attributes must be possessed: the most important being a bounded, physically sealed, enclosed body (what I term the corporeal capacity for ‘self-containment’), and also the bodily ability to act as the agent of one’s embodied actions and intentions. Patients⁹ who lose either, or both of these bodily attributes, as we shall see, fall out of the category of personhood in both their own and other people’s evaluations; they experience a diminishment of self. It will thus be one of the aims of this book to revise and extend existing theoretical paradigms to incorporate more of a ‘bodily element’. In so doing, this study will also provide a powerful critique of recent sociological work on the body (e.g. Featherstone et al. 1993; Falk 1994; Shilling 1993). Whilst the authors of these studies have also attempted to make the body of the modern ‘Western’ person visible, the emphasis given in their work to the ‘performative’ aspects of embodiment presents, as indicated above, a somewhat partial picture.

Yet it is not enough to bring the body fully into frameworks of observation and analysis: as the experiences of the patients described in this book will also be used to highlight, bodies, in practice, cannot usually be considered in isolation from interpersonal relationships, since both, in interdependent ways, are central to contemporary ‘Western’ formations and conceptions of self. By making the connections between bodies and relationships explicit, this work constitutes a significant theoretical advance on social studies of embodiment, and on those studies which explore the role of intimacy and emotions in the making of self through social interconnection (e.g. Giddens 1991, 1993).

I now turn to the development of the modern hospice movement, since both the day care service and inpatient facility where I conducted research were located under the umbrella of this particular organisation. Th...

Table des matières

• Cover Page
• Title Page
• Copyright Page
• Preface and Acknowledgements
• 1: Introduction
• 2: Day Care: A Safe Retreat
• 3: ‘Body-Subject’ to ‘Body-Object’ Hospice Care and the Dying Patient
• 4: Inpatient Hospice Care: The Sequestration of the Unbounded Body and ‘Dirty Dying’
• 5: Invisible Suffering: The Social Death
• 6: Final Reflections
• Appendix A
• Appendix B: Duties of Hospice In-House Volunteers
• Notes
• Bibliography