Contemporary Hospice Care: the Sequestration of the Unbounded Body and 'Dirty Dying

Sociology of Health & Illness Vol. 20 No.2 1998 ISSN 0141–9889, pp. 121–143

Contemporary hospice care: the sequestration ofthe unbounded body and ‘dirty dying’

Julia Lawton

Department of Social Anthropology, University of Cambridge

Abstract This paper is based on a 10-month participant observation studywithin an inpatient hospice in Southern England. I highlight thedifficulties of using homogenous categories such as ‘the dyingpatient’ and ‘the dying process’ in exploring the marginalisationof patients within the physical space of contemporary hospicesand similar institutions. In opposition to such categories, myfindings indicate the importance of focusing upon the body ofthe patient, and the disease processes taking place within it andupon its surfaces, in understanding why some patients are nowsequestered within hospices whereas others are not. I argue thata significant proportion of patients are admitted to hospicesbecause of the way in which their disease spread and subsequentdeterioration affects the boundedness of their bodies andundermines their identities as persons. I suggest that conceptual-ising a hospice as a ‘no place’ – i.e. a space within which thetaboo processes of bodily deformation and decay are sequestered– allows it to be understood as a central part of contemporaryWestern culture. Setting the disintegrating body apart frommainstream society, as hospices appear to do, enables certainideas about ‘living’, personhood and the hygienic, sanitised,bounded body to be symbolically enforced and maintained.

Keywords: hospice, the body, sequestration, dying, suffering, self, identity,body fluids

Background

During the past decade or so there has been a noticeable shift away fromhospitals and other institutions as the site for death and dying in the U.K.A number of studies suggest that, if given a choice, the majority of termi-nally ill patients would prefer to be cared for and die in their own homes© Blackwell Publishers Ltd/Editorial Board 1998. Published by Blackwell Publishers, 108 Cowley Road,Oxford OX4 1JF, UK and 350 Main Street, Malden MA02148, USA.

rather than in the sanitised and impersonal environment of the hospital(see, for example, Thorpe 1993, Townsend et al. 1990, Dunlop et al 1989).Whilst much contention and debate surrounds this issue (some scholarsargue, for instance, that the desirability of a home death is a form ofrhetoric congenial to policy makers and planners, promoted by thembecause it is a more cost-effective form of care1 (Holmes 1995, Neale 1993,Parker 1990)), it remains the case that a progressive shift is occurringtowards the care of patients with advanced and terminal illnesses in thecommunity. Hence, as Lunt has observed in his overview of terminal cancercare services in Great Britain, a switch in emphasis is taking place at thepolicy and planning level from the establishment and support of hospiceinpatient units to the financing of home care services (1985: 753, see alsoTaylor 1983, Standing Medical Advisory Committee 1993).

As a consequence of these broader cultural trends, the NHS hospicewhere I conducted my fieldwork underwent some major changes bothbefore and during the ten-month period of study. The hospice, which firstopened in 1981, was originally a 25-bed unit. Six beds were cut about a yearbefore I started my fieldwork, and a further three two months into thestudy. In both cases, bed cutbacks resulted from the decision of the localHealth Commission (the ‘purchasers’) to allocate a larger proportion of itspalliative care budget to primary care services.

The permanent closure of beds had a direct impact upon the types ofpatient admitted to the hospice. Bed shortages necessitated a review of thehospice’s admissions policy and, as a consequence, a decision was made toreduce the number of respite admissions2 substantially. By the end of theperiod of study, admissions for non-cancer respite patients were stoppedaltogether. Both the hospice doctors and the NHS managers argued thatthe young chronically sick were ‘constipating the service’, by ‘blockingbeds’ and ‘draining scarce nursing time and resources’ away from more‘pressing’ and ‘deserving’ cases. Priority was instead given to patientsexhibiting particularly distressing symptoms, especially during the terminalphase of their illness. Owing to the increased pressure to free beds, the hos-pice also encouraged the earliest possible discharge for all its patients.Whenever it was viable, patients were returned to their homes after a one ortwo week stay in the hospice (indeed, some patients were discharged hometo die). As I will examine below, the patients who were most likely toremain within the hospice on a longer-term basis were those who had esca-lating symptoms which could not be successfully treated or controlled bythe medical staff.

The above discussion thus makes problematic the argument that hospicessequester dying patients (Mellor 1993: 21) because of the taboo nature ofdeath and dying in contemporary Western society (Aries 1974, Gorer 1965).It is, indeed, pertinent that a significant proportion of patients are nowcared for, and do die at home. Certainly, in the part of England where Iconducted my fieldwork, approximately one-third of all cancer deaths

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© Blackwell Publishers Ltd/Editorial Board 1998

occurred at home, with the remaining two-thirds being divided roughlyequally between the hospice and the hospital. Hence, it will be my con-tention in this paper, that within the developing climate of community care,hospices are progressively able only to cater for those patients who cannotbe looked after within the community, because the community cannotaccommodate them either practically or symbolically. Consequently, it isnot dying as such but, rather, certain kinds of deaths which are to be foundwithin contemporary hospices. As the following ethnography and analysiswill highlight, it is important to focus upon the body of the patient, and thedisease processes taking place within it and upon its surfaces, in order tounderstand why some patients are now contained within the boundedspaces of hospices, whereas others are not. I will argue that contemporaryhospices set a particular type of bodily deterioration, demise, and decayapart from mainstream society. In so doing, I will suggest that hospices andother similar institutions enable certain ideas about ‘living’, personhoodand the hygienic, sanitised, somatically bounded body to be symbolicallyenforced and maintained.

This paper begins with a detailed description of the observations madedirectly within the hospice. However, the ethnography will be used in alater section as a platform for addressing broader theoretical concerns.Drawing upon the work of Elias and Douglas, together with other anthro-pological and cross-cultural material, I will examine why an intolerance ofthe disintegrating, decaying body appears to have become such a markedfeature of the contemporary West; an intolerance which has led to theremoval of such a body from mainstream social life.

Methodology

The data presented in this paper were collected by means of participantobservation. I worked directly alongside the nursing staff and in-house vol-unteers, as this allowed me to make sustained and repeated observations onpatients, their families and the staff in the wards, side rooms and othercommunal areas in the hospice, without the internal dynamics taking placethere being affected. The patients were allowed to control the content ofany conversations they had with me; this allowed original and unantici-pated material to emerge, and avoided the possibility of the patient beingdrawn into discussing a topic which they might find distressing. I was alsoable to obtain data by sitting in on staff-handovers and multi-disciplinarymeetings. In accordance with the wishes of the Local Research EthicsCommittee, the patients were, whenever possible, informed of the researchand given the choice of ‘opting out’ of any observations made. Only onepatient asked to be excluded from the study. Consequently, with the excep-tion of this one person, the observations and themes developed in this paperare drawn from the entire population of this hospice. During the 10-month

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period of study, I was able to make observations on approximately 280 dif-ferent patients in total. Whilst the research outlined here is based on anintensive study conducted in one NHS-sponsored hospice, I would argue thatall hospices in the UK are currently being subjected to similar social and eco-nomic forces, as I have indicated above. Versions of this paper have beenpresented in a number of different palliative care forums. The feedback fromprofessionals working in other inpatient hospices suggests that the themes,issues and trends identified here are applicable to their own establishments;albeit some hospices in the voluntary sector have not, as yet, been subjectedto the same economic cutbacks as those located within the NHS.

I begin with an extended case study of a patient named ‘Annie’. In somerespects the following example is remarkable because her death was consid-ered by the staff to be one of the most distressing that occurred within thehospice during the period of my fieldwork. Nevertheless, it provides a use-ful starting point because Annie’s experience encompasses a number of fea-tures shared entirely, or in part, by the majority of patients receiving carewithin the hospice.

Case study – Annie

Annie was 67 when she was first admitted to the hospice on 12th April 1995.Prior to her admission she was living at home with her retired husband andrecently divorced son. She also had a married daughter living locally.

Annie had been diagnosed as having cancer of the cervix in April 1994.Following surgery and post-operative radiotherapy it was believed that shehad made a full recovery. However, in February 1995 a smear test revealeda large recurrence which was subsequently found to have spread to herpelvic wall. Annie was informed by her doctor that there was little furtherthat could be done for her because her cancer was too far advanced. Shewas referred to a Macmillan nurse for palliative care in March.

Initially, Annie managed at home with regular medical and emotionalsupport from her District and Macmillan nurses. At this stage, her greatestproblem stemmed from the development of severe oedema in both of herlegs which had caused her to become bed-bound.3 She found it difficult torelinquish her ‘housewife’ duties to her husband and son, and was still try-ing to manage the household from her bed.

Annie’s mobility improved a little after she received lymphoedema treat-ment at home. She became sufficiently ambulant to take herself independentlyto the bathroom, but she remained largely bed-bound. With the encourage-ment and support of her Macmillan nurse, she began to tie up some of her‘loose ends’, such as writing her will. Her nurse reported that Annie and herfamily were ‘terrified’ about what the future held in store for them.

At the beginning of April, Annie’s condition began to deteriorate. Shedeveloped a recto-vaginal fistula, which meant that her urine and faeces

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started coming out through the same passageway. Problems of faecal leak-age precipitated her admission to the hospice for symptom control.

Originally, Annie had been very anxious about the possibility of beingadmitted to the hospice. As she explained about one week into her stay:‘Initially I didn’t want to come in here because I didn’t think I’d get outagain’. In fact, when recurrence of cancer was first diagnosed, Annie madeher family promise they would do everything possible to enable her to stayat home. It is highly relevant, therefore, that it was Annie herself whofinally requested admission to the hospice. Her rationale was twofold. First,she was concerned about how exhausted her husband had become: ‘I couldsee him crumbling in front of me’. Second, she felt she could not get enoughprivacy at home to attend to her personal hygiene. Annie had become semi-incontinent and was also suffering from periodic bouts of diarrhoea, whichshe found deeply distressing and embarrassing. She did not want her familyto witness her bodily degradation first hand.

Following her admission to the hospice, Annie was placed on one of thecommunal wards. Initially, she was sufficiently mobile to take herself inde-pendently to the toilet and bathroom, and she remained stubbornly ‘self-caring’ even though she had to spend up to one hour cleaning herself upafter using the toilet. Whilst, superficially, Annie seemed like a bright andcheerful person, the night staff reported a very different picture. Annie wasfrequently heard sobbing quietly to herself whilst locked inside the toilet.

About ten days into her admission, Annie deteriorated further. Her fis-tula enlarged substantially and, as a result, every time she attempted to getout of bed and stand up, diarrhoea would pour straight out of her body.Consequently, Annie had to start using a commode on the ward rather thanwalking to the toilet. She also started passing blood. In addition, she con-tracted a bladder infection which caused her urine to develop a ‘very offen-sive’ smell.

It was around this time that Annie’s bodily degradation began to have asignificant impact upon the hospice as a whole. Whenever she used thecommode on the ward, the smell would penetrate right through the build-ing to the main entrance. The staff burnt aromatherapy oils around herbed, but, generally, these did little to mask the odour. The other patientscomplained that sometimes the smell made them want to vomit.

Annie became increasingly anxious about the possibility of being dis-charged home. She felt that she had lost all her dignity. She also stressedthat there would be insufficient privacy at home to mask the smell and herdegradation from her family. At the multi-disciplinary team meeting to dis-cuss her case, the Senior Consultant argued that it would be ‘cruel andfutile’ to press for a discharge. None of the other staff members challengedhis decision in spite of the economic pressures to free Annie’s bed. Therewas no further talk of discharge and Annie and her family were promisedthat she could remain in the hospice until she died.

Throughout April, Annie continued to deteriorate. She ‘rotted away



below’ (as the nurses put it) and lost all control over her bowel and bladderfunctions. As a consequence, she suffered from continuous bouts of inconti-nence. It proved impossible to keep her clean and her sheets fresh. On sev-eral occasions when the nurses came to attend to her they found hercovered to her shoulders in her own urine and excreta.

By this stage, the smell resulting from her incontinence had become aperpetual problem, and the staff became increasingly concerned about theimpact Annie’s bodily deterioration was having upon the other patients onher ward. They suggested that she might prefer the privacy of a side room,but Annie remained adamant that she wanted ‘to stay with the ladies’. Likea number of working class patients I encountered in the hospice, Annie wasworried that she would get lonely if placed in a room on her own. Anniealso appeared to have become more or less oblivious to her own smell.Whilst she was lucid on some occasions, she was also suffering fromincreased bouts of tiredness and confusion.

As Annie had made it clear that she did not want to be moved to a sideroom, the staff were left with the problem of what to do with the otherpatients on her ward. Whilst none of them were actually moved out of theward because of Annie’s presence, I did observe that when a patient died orwas discharged their bed was not refilled. By the time I became closelyinvolved with Annie’s case (which was about three weeks into her stay inthe hospice) only two other women remained on her ward. Paula had brainsecondaries and was admitted to the hospice for terminal care. Sheremained uncommunicative and unaware of her environment until she died.Doris, however, was fully lucid and became deeply upset by Annie’s deteri-oration; she requested her own discharge, pointing to ‘the terrible smell’and Annie’s distress as the main precipitating factors. She made it veryclear that under no circumstances did she ever want to return to the hos-pice. Doris needed a lot of reassurance that her own death was unlikely tobe as undignified and distressing as Annie’s.

The morning that Doris was discharged Annie became very tearful andafraid. I was instructed by one of the senior nurses to go and comfort heruntil her husband and the hospice chaplain arrived. Annie was convincedthat she was being punished for all the wrongs in her life; she suggested thatshe must have committed some terrible sin in the past for God to inflictsuch a cruel exit upon her. She was also upset that her husband had writtenher a romantic card the previous day telling her how much he loved her.She wanted to know why he was saying this to her now, when he had neverdone so in the past. Annie complained of feeling worthless and the object ofother people’s pity.

As the morning went on, Annie became increasingly agitated and afraid.Her diarrhoea escalated, and at lunch time she asked to be sedated. Thestaff fulfilled her request after she repeated it several further times. This wasthe last time I spoke to Annie; she remained heavily sedated and uncon-scious until she died approximately two weeks later.

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The day after Annie was first sedated, Paula, the other woman remainingon her ward, died. Once Paula’s body had been removed from the ward, thestaff felt they had no option but to move Annie to a side room. Theyapproached her family and explained that they could not really admit anypatients to Annie’s ward because of the smell. The family readily gave theirconsent for Annie to be moved. Both her husband and son expressed theirembarrassment that Annie had been ‘stinking out’ the ward for so long.

Once Annie had been settled into her side room, visits from her familydropped off rapidly. They could not see any point, they said, in keeping avigil around her bed when Annie was almost certainly oblivious to theirpresence. The stench of incontinence and decaying flesh was also consider-ably stronger in the side room than it had been on the ward.

In the final days of her life, the staff kept Annie very comfortable byincreasing her doses of diamorphine. Annie did not actually die until theearly hours of 16th May, which was approximately six weeks after she wasfirst admitted to the hospice. None of her family was present at the time ofher death.

Outside:inside :: boundedness:unboundedness – hospice care and theunbounded body

Annie’s case will be referred to at various points in this paper because of therich and complex issues it brings to the fore. However, the one theme Iwant to focus upon at this stage concerns the way in which the developmentand spread of her cervical cancer affected the boundedness of her body.One of the main factors which precipitated Annie’s admission to the hos-pice for symptom control was the development of a fistula which resulted infaecal leakage. As the fistula enlarged, Annie ceased to have any controlover her bowel and bladder functions. Because the management of theeffects of this break-down of bodily control ceased to be effective, all plansfor a discharge were abandoned.

In this respect, Annie’s case is far from atypical. During the course of myfieldwork, the most common reason for a patient to be admitted to the hos-pice was for the control of symptoms, a phenomenon which became espe-cially marked after the number of beds was cut (see above). In a studyconducted to identify the factors influencing the admission of patients to St.Christopher’s hospice in London, Woodhall similarly found that ‘the majorcause of admission is either “poor symptom control” or “good to fairlygood symptom control” which subsequently fails’ (1986: 32). As I will illus-trate further below, what most of the symptoms requiring control shared incommon was that they caused the surfaces of the patient’s body to ruptureand break down. As a consequence, fluids and matter normally containedwithin the patient’s body were leaked and emitted to the outside, often inan uncontrolled and ad hoc fashion. Staff often employed metaphors such



as ‘falling apart at the seams’ when referring to such patients who were ‘rot-ting inside’ and ‘being eaten away by their cancer’. Patients requiring symp-tom control thus had bodies which I will term here as ‘unbounded’.

Symptom control encompassed a wide range of bodily ailments and theirside-effects. Amongst the most common were incontinence of urine and faeces, uncontrolled vomiting (including faecal vomit), fungating tumours(the rotting away of a tumour site on the surface of the skin) and weepinglimbs which resulted from the development of gross oedema in the patient’slegs and/or arms. As a result, the patient’s limbs would swell to such anextent that the skin burst and lymph fluid continuously seeped out.

Other symptoms, though less common, were equally pertinent. Forexample, several emergency admissions occurred after a patient startedcoughing up large amounts of blood at home. In another instance a patient,Tony, was admitted after he developed a facial tumour. Apart from causinga gross distortion of his features (Tony’s left eye was gradually beingpushed sideways and out of its socket), the expanding tumour was alsocausing the arteries in his nasal area to breakdown. As a result, Tony suf-fered from continuous nose bleeds. He had to have a bolus of cloth per-manently attached beneath his nose to absorb the frequent outpourings ofblood and mucus. The doctors predicted that Tony’s death could be causedat any time by a ‘catastrophic nose bleed’, and for this reason were veryreluctant to consider a discharge. Similarly, Marie developed a largetumour in her groin area. During her seven-week stay in the hospice itswelled to the size of a rugby ball. On a number of occasions the tumoursite partially ruptured, causing blood to spurt out onto the nurses attendingto her. Again, the staff believed Marie was ‘living with a time bomb’ as herswelling could burst at any time and cause her death.

On a number of occasions patients’ symptoms could be successfullytreated or controlled by the medical staff, and the boundedness of theirbodies could thus be reinstated. For example, several patients were admit-ted with incontinence of urine, and were able to return home once they hadbeen catheterised. Other symptoms such as violent and repeated vomitingand diarrhoea could often be treated through changes in diet and medica-tion, and weeping limbs and fungating tumours through application ofdressings and bandages. Having had their bodies successfully ‘re-bounded’,it was then possible, and common, for the patient to be discharged. In thisrespect, the hospice could be understood as a mediator between theunbounded and the bounded body, with patients being moved into the hos-pice when the surfaces of their bodies ruptured and broke down, andmoved out again when their bodily boundedness and integrity were subse-quently restored.

A number of patients, however, like Annie, had symptoms which esca-lated following their admission to the hospice and, as a consequence, theirdeterioration was such that the boundedness of their bodies was impossibleto reinstate. These patients, who will form the focus of the following

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ethnography and discussions, were the ones most likely to remain withinthe hospice until they died. What was striking about this sub-group ofpatients was that they all exhibited behaviour which suggested a total lossof self and social identity once their bodies became severely and irreversiblyunbounded.

Annie was one of several patients admitted with recto-vaginal fistulasduring my fieldwork. Another woman, Deborah, experienced a similar trajectory of deterioration and decline. She was originally admitted for ablood transfusion with a view to being discharged within a couple of days,but a developing fistula, coupled with periodic bouts of confusion (possiblycaused by the spread of cancer to her brain), kept her in the hospice untilshe died.

The staff considered Deborah a very difficult patient to look after. Onenight the nurses were kept occupied for several hours after she disappearedfrom her side room. She was eventually found in the staff toilets totally cov-ered in excreta. The walls and floor of the toilet were also splattered withher faeces. Deborah had by then recovered from her temporarily confusedstate and was very upset and embarrassed. The staff decided to moveDeborah onto one of the wards so that it would be easier to keep an eye onher. Around this time Deborah’s deterioration began to escalate and herincontinence became more or less continuous. The staff were having tochange her pads at least four times at night.

When Deborah’s bodily deterioration escalated, I observed that she hadsuddenly become a lot more withdrawn. After she had been on the ward fora couple of days she started asking for the curtains to be drawn around herbed to give her more privacy. A day or so later she stopped talking alto-gether, unless it was really necessary (to ask for the commode, for example),even when her family and other visitors were present. Deborah spent theremaining ten days of her life either sleeping or staring blankly into space.She refused all food and drink. The staff also noticed this ‘strange’ behav-iour. One of the hospice doctors concluded that ‘for all intents and pur-poses she [had] shut herself off in a frustrated and irreversible silence’.Deborah was moved back into a side room and died there a couple of dayslater.

I spoke to Deborah’s daughter about a month after she had died and shereflected very frankly and openly upon her mother’s death. She felt she hadactually said her ‘good-byes’ to Deborah about a week before she died (i.e.around the time Deborah became very withdrawn): ‘After that she reallywasn’t there anymore . . . she wasn’t my mother’.

What Deborah appears to have done was to ‘disengage’ and ‘switch her-self off’ before her physical cessation. This type of withdrawal was commonamongst ‘unbounded’ patients. Another patient, Dolly, had cancer of thecolon and was admitted after becoming chronically incontinent at home.Her husband informed me that every time she had a severe bout of diar-rhoea she begged him to help her take her own life. Dolly’s requests for



euthanasia continued during the first week of her stay in the hospice. Thestaff were unable to get her diarrhoea under control. In addition, she wentinto obstruction. The tumour mass expanded and blocked her colon and, asa consequence, digested food would reach her lower gut and then comeback up as faecal vomit. Around the time Dolly went into total obstructionthe staff observed a notable change in her behaviour. Dolly stoppedrequesting euthanasia; in fact she stopped talking altogether. When thenurses came to turn her in bed or to attend to her care she would close hereyes and totally ignore them. As one nurse observed: ‘it’s as if she’s shut theoutside world out and herself off in the process’.

This type of ‘switching off’ has been identified in other settings such asthe Holocaust. Pines points to instances in which women ‘overwhelmed byphysical and emotional helplessness and despair, almost reached a state ofpsychic death’ (1993: 185, see also Langer 1996). Pines uses Lifton’s conceptof ‘psychic closing off’ to indicate the total loss of self that occurred (1993:180). This form of mental shut-down is clearly a lot more fundamental andradical than experiences of ‘fragmentation of the self’ observed by Martinamongst women suffering temporary – and reversible – bodily trauma anddisruption such as may occur during menstruation, child birth and cae-sarean section (1989: 86). On such occasions, women speak of, and experi-ence, a ‘momentary split’, a fragmentation, in which the ‘self’ separates anddissociates itself from the ‘body’ (1989: 76–8). What is salient in theseinstances is that whilst the self becomes dissociated from the body, it con-tinues to exist as a self. Amongst the severely and irreversibly ‘unbounded’hospice patients whom I observed (and amongst the Holocaust women dis-cussed by Pines), the self appears to have ‘gone’ altogether, leaving little, ifanything, but the ‘empty’ body. It is, indeed, reasonable to suggest that‘mental shut down’ expresses, and reflects, a total loss of selfhood if oneaccepts Giddens’ argument that the contemporary Western ‘self’ is an emi-nently social and relational entity, reflexively constituted through processesconnecting the ‘personal’ to the ‘social’ (1991: 33, see also Rose 1990).

Other patients, like Annie, attempted to ‘switch themselves off’ byrequesting heavy sedation. Kath, for example, requested that she wasmoved to a side room and given a large dose of analgesics after comment-ing, on repeated occasions, that ‘you wouldn’t put a dog through this’. Hermessage was clear and simple: it would be much more compassionate if thestaff put her out of her misery. Some patients, like Deborah, refused to eator drink, thereby accelerating their own demise; others, like Dolly, mademore explicit requests for euthanasia. Stan, a patient with cancer of theprostate, began suffering from chronic diarrhoea about a week into hisadmission. He also had problems with his catheter which frequently becameblocked because bits of tumour were being secreted in his urine. On a num-ber of occasions he would wake up ‘covered in my own dirt and wetness’.Stan repeatedly asked the staff to help him to die.

What all these examples serve to highlight is that once a patient’s body

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fell severely and irreversibly apart, she or he exhibited behaviour which sug-gests a loss of sense of self. This loss of self was reflected in the tendency ofsome to switch themselves off and to disengage from the events and rela-tionships taking place around them (hence Deborah’s daughter’s commentthat her mother had already ‘gone’ once she became withdrawn). Otherpatients sought external aid to achieve withdrawal, such as requestingheavy sedation which brought them prematurely into semi-coma. Sedation,as Fagerhaugh and Strauss have argued, puts ‘the patient into a living sleepwith drugs’ and thus constitutes an imposed ‘social death’ (1977: 162).Some patients also made direct requests for euthanasia. Euthanasia, asDworkin suggests, is the option of a person who chooses death after ‘life inearnest . . . has ended’ (1993: 3).

The above discussion serves to throw a number of complex issues intorelief. Morgan and Lee argue that ‘to ask the question of what constitutesdeath is to ask also what separates life from death and at what point lifemay hold no greater worth than death’ (1994: xxi). All of the patients con-sidered above exhibited behaviour (withdrawal from sociality and reciproc-ity networks) which suggests a lack of personhood and identity: a form ofsocial death, which sometimes occurred several weeks prior to their physicalcessation. My observations thus provide interesting insights into the rela-tionship between the body, self and the person in the contemporary Westerncontext. My findings suggest that the identity and selfhood of the contempo-rary Western person is fundamentally dependent upon the possession of aphysically bounded body, since I have indicated something of the impossi-bility of being a person whilst having a body without boundaries (see belowfor a theoretical discussion). Thus, it could be argued that hospices servedon one level as ‘fringe’/‘liminal’ spaces within which these ‘non-persons’,wavering ‘between two worlds’, remain buffered (Van Gennep 1972: 18).

The ‘special status’ accorded to patients with advanced cancer

Within medical and social science literatures, concern has been expressedabout the fact that cancer patients are accorded a special social status inrelation to other persons (particularly older people) suffering from chronicdegenerative diseases. Contemporary hospices are principally geared to carefor patients with advanced cancer, whereas elderly and other patients withdegenerative diseases – ‘the disadvantaged dying’ (Harris 1990) – are rarelyincluded in planning services for continuing and terminal care (Clark 1993:172; Cohen 1996). ‘The disproportionate concentration of care on thosedying of cancer’, as Harris suggests ‘has created an underclass of dyingpeople’ (1990: 28). Seale, likewise, observes that it is much easier to raisemoney for cancer services (e.g. for building a hospice) than for older people(1989). However, no wholly satisfactory explanation has as yet been offeredas to why this should be the case.



The special status accorded to cancer patients can perhaps be explainedin part by the fact that the cancer death is commonly associated with the‘untimely’ and hence ‘tragic’ death (Hockey 1990: 78). In addition, whatputs advanced cancer in contrast to other chronic degenerative conditions(for example, arthritis or osteoporosis), and mental (e.g. Alzheimer’s) andcardiac diseases is that life expectancy can be predicted with a fair degree ofaccuracy (Standing Medical Advisory Committee 1993; see also Sudnow1967: 67). Consequently, as Field has observed, it is much easier to seepatients with advanced malignant disease as ‘dying’ in both lay and medicalperceptions (1996: 263).

My findings, however, suggest that another reason why institutionalisedhospice care caters now more or less exclusively for cancer patients may bebecause of the way in which cancer, in its late stages, can severely affect theboundedness of the patient’s body. Indeed, I have already demonstrated therole of the hospice as a mediator between the bounded and unboundedbody. Amongst other categories of ‘dying’ patients, bodily unboundednessoccurs a lot less frequently. Weisman, for example, has noted that a verydifferent attitude pertains to the cardiac patient than to a patient with can-cer. He explains this difference as partly stemming from the fact that car-dio-vascular diseases are unlikely to affect that patient’s body-image, whereas cancer (and its treatment) often result in physical disfigurement (1979:36–38). Morris similarly notes that chronic illness, accompanied by chronicpain:

keep[s] a low profile by doggedly failing to convey the macabre glory ofdeformity . . . [it] attacks millions of people without leaving outward signsof damage (1991: 66 – emphasis added).

The sequestration of the unbounded body: an ethnographic and theoreticaldiscussion

One obvious question clearly remains to be addressed: namely, why thesequestration of the unbounded body is deemed both appropriate, and nec-essary, within the contemporary Western context. This section will be usedto demonstrate that contemporary marginalising practices should be under-stood as a culturally and historically specific response to bodily unbounded-ness.

When carers discussed their reasons for wanting a patient to come intothe hospice, their comments highlighted a common theme. Carers were notexplicitly concerned about the fact that the patient was dying, rather, theprimary reason they suggested for wanting the patient to be admitted wasbecause they felt repelled by the patient being incontinent, vomiting, and/oremitting other bodily fluids within their own homes. As the wife of onepatient put it:

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He started having a lot of problems with vomiting. You just never knewwhen it was going to happen. All of a sudden it would just come pouringout. It went everywhere . . . all over his bed, all over the carpet. It wasdisgusting.

Another wife offered the following comment:

Things got very difficult after he became incontinent. I had to help himchange his pads. It made me feel really sick . . . Sometimes he had anaccident and it went all over the place. I still can’t get the stench of urineout of the carpet . . . I’m so glad he’s in here now.

Carers’ perceptions were also shared by the patients themselves. As Annie’scase study serves to highlight, patients often felt that home did not affordan appropriate space in which their bodily disintegration should occur.

The breakdown of the body’s boundedness, furthermore, was oftenaccompanied by the emission of smells. It quickly came to my attentionthat the odours released from patients’ disintegrating bodies not only pre-cipitated their admission to the hospice, but, in addition, often broughtabout a further marginalisation within the building itself. I observed thatsmell created a boundary around the patient, shunting others away. On sev-eral occasions, patients were driven out of the wards after another patienthad been heavily incontinent in bed. For example, Bill became doublyincontinent shortly before he died. Another patient on his ward, Brian,took himself off to the Day Room early on in the morning and staunchlyrefused to re-enter the ward until the evening. I initially assumed that Brianwished to avoid Bill because he did not want to be in the same space as adying patient. However, this misapprehension was quickly dispelled. Brianexplained that he did not have difficulties being exposed to people whowere dying; he had fought in the second world war and, consequently, hadwitnessed many deaths first hand. Instead, Brian pointed to the ‘terriblesmell; I’ve worked on a pig farm and not smelt anything as bad as this’.Similar behaviour was exhibited by Doris who pressed for her own dis-charge after Annie deteriorated significantly in the bed next to her.

Sometimes, staff attempted to manage problems of smell by transferringa patient to a side room, thereby enabling the odours emitted from theirbody to be contained within a more bounded space. Annie is a good case inpoint. Another patient, Ron, was moved after it was reported that ‘he smeltlike dog shit’. One of the nurses added that ‘you couldn’t go into his wardthis morning without squirting lemon aerosol in front of your nose’. Otherpatients were admitted directly to side rooms because of anticipated prob-lems with odour. Sydney, for instance, was placed in a single room becausehe had a fungating tumour. The smell proved to be so repellent that his wiferefused to go into his room from the time of his admission until his deathsix days later.



The negative reaction which carers and other participants within the hos-pice exhibited towards unbounded patients can perhaps be understood interms of the capacity of the unbounded body to breach and percolate theirown body boundaries. The smells, and other fluids and matter emitted fromthe unbounded body, extended the boundaries of the patient’s corporeality,such that the patient’s body ‘seeped’ into the boundaries and spaces ofother persons and other places. Hence, strategies such as avoidance and/orthe removal of a patient to a side room were employed in cases where theeffects of the patient’s unboundedness could not be contained or controlled.In effect, the other participants in the hospice were trying to maintain theintegrity of their own selves, by avoiding having their body boundariesbreached by the corrosive effects of the sick person’s bodily disintegration.

Douglas, in her analysis of pollution concepts and taboos, argues for asymbolic classificatory approach to culturally embedded ideas of defilementand disorder. Concepts of ‘dirt’, she suggests, emerge in situations where aset of ordered relations and classificatory schema are directly contravened.Hence, pollution behaviour ‘is the reaction which condemns any object oridea likely to confuse or contradict cherished classifications’ (1984: 35).Douglas’s approach, I suggest, can be usefully applied to provide insightsinto why intolerance of bodily emissions and smells has become such amarked feature of the contemporary ‘deodorised’ West. Whilst the carersobserved in my study expressed revulsion towards unbounded patients,both Classen et al. (1994) and Corbin (1986) have provided rich accountswhich demonstrate that historically (especially in the Medieval period)mainstream European social life was pervaded by the smells of bodies, bod-ily emissions and other pungent odours. As Classen has argued, ‘odourscannot easily be contained, they escape and cross boundaries, blending dif-ferent olfactory wholes’ (1994: 4). Because of their boundary-transgressingnature, smells are thus opposed to ‘our modern linear world view, with itsemphasis on privacy, discrete divisions and superficial interactions’ (1994:5). Such a perspective helps to explain why unbounded patients weresequestered within the hospice. The hospice, I suggest, served to imposeorder upon disorder through enclosing and containing the odours emittedfrom patients’ disintegrating bodies within a bounded space. It requireslittle further imagination to argue that the walls of the hospice served as theboundaries of the patient’s body in situations where the patient lacked thecorporeal capacity for self-containment.

Yet, as the following discussion will serve to make evident, the currentWestern intolerance of bodily disintegration and bodily emissions can alsobe related to contemporary individualistic constructions of the person as astable, bounded and autonomous entity.

It is now a well-rehearsed argument within the anthropological and soci-ological literature that the body, and experiential modes of embodiment,are culturally elaborated and culturally embedded products. Following onfrom Mauss’s observations on ‘techniques of the body’ (1934), Douglas, for

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example, has argued for a dialectical relationship between the ‘body’ and‘society’ within any given cultural milieu. Whilst the body can act as a‘model for society’ by affording ‘a source of symbols for other complexstructures’ (1984: 115), Douglas also suggests that the ‘social body con-strains the way the physical body is perceived’ (1970: 65). Hence, it isthrough the body, and the way in which the body is deployed and modifiedthat socially appropriate self-understandings are created and reproduced. Asimilar argument is made by Bourdieu who points to the inter-relationshipbetween embodied activities and the ‘habitus’ within which they arelocated. The body, he suggests, enters into the production of the habitus; itacts as the mediator between social structures and individual action, beingshaped by the former and itself regulating the latter (Bourdieu 1978: 834).Foucault also treats the body as an emergent product of cultural norms andregulations, although he is primarily concerned with the body as a site ofpolitical ‘subjection’, inscribed by systems of power. The body, he suggests,is directly involved in the political field, ‘power relations have an immediatehold upon it; they invest it, mark it, train it, force it to carry out tasks, toperform ceremonies, to emit signs’ (1991: 25). For Foucault, power rela-tions thus impinge directly upon bodies so as to construct them as ‘docile’and ‘useful’. Yet the power exercised over, and through, the body does notnecessarily have to be the privilege of a dominant class. As Foucault goeson to demonstrate, through the normalising practices that accompany thestandardisation of the industrial process, power becomes diffused every-where, amongst the dominated as well as the dominant (1991: 184).

The work of the above academics can be fed into, and used to support,Elias’s argument that contemporary Western constructions of the body as a‘peculiarly intimate and private thing’ are neither natural nor innate, butrather the product of a long, gradual and historically specific ‘civilisingprocess’ (1994). This process, which extended over many centuries, involvedthe gradual elaboration and internalisation – in the form of self controls –of a whole series of taboos and precepts regulating such things as bodilyfunctions and bodily exposure. As a consequence, a number of ‘naturalfunctions’ such as defecating, urinating and spitting which had previouslybeen public acts were eliminated from social life and displaced ‘behind thescenes’ (1994: 114). As Elias further suggests, the privatisation of bodilyfunctions did not occur uniformly across society. Bodily taboos and affectcontrols first became commonplace amongst the upper classes in WesternEurope, and slowly filtered down to, and became established amongst, thebourgeoisie, followed later by the lower social classes.

Elias thus traces a gradual historical transition from an ‘open’, ‘incom-plete body’, to a body with clearly defined boundaries, isolated, alone, andfenced off from other bodies (1994: 56, Fontaine 1978: 245). What is partic-ularly pertinent in Elias’s historical account is the relationship that can bedrawn between the emergence of the bounded body as central to contempo-rary Western concepts of the person and the rise of individualism.



Crawford, for example, stresses the inter-relationship between the asceticindividualism of the Protestant Reformation and the construction of thebody as ‘healthy’, ‘enclosed’, and ‘disciplined’. He suggests that the‘Protestant temperament’ of austerity, coupled with a ‘work ethic’ that hasinculcated a predisposition towards applied entrepreneurial activity anddisciplined saving, has led to an emphasis upon personal discipline, auton-omy, and self-responsibility (1994: 1349, see also Foucault 1991: 138).Crawford’s argument thus closely parallels Douglas’s assertion that thebody can act as a ‘text’ which reflects and reproduces the concerns, valuesand preoccupations of the particular culture within which it is located (seeabove). Self-control, in effect, has become mapped onto, and experiencedwithin, the physical body as self-containment. Hence, Bordo’s observationthat the contemporary Western body ideal – achieved through activitiessuch as dieting and ‘working out’ – has become one which is ‘absolutelytight, contained, “bolted down”’ (1993: 190). The ‘quest for firm bodilymargins’ (1993: 191), she suggests, can be understood within a cultural con-text in which ‘the firm, developed body has become a symbol of the correctattitude; it means that one “cares” about oneself and how one appears toothers, suggesting will power, energy, control over infantile impulse, theability to “shape your life”’ (1993: 195). In a similar vein, Gell developsAnzieu’s idea of ‘character armour’ to explain the contemporary Westernpreoccupation with body-building. Body-building, Anzieu suggests, servesas a means of constructing ‘an extra-resilient second skin around the “realself”’ (1993: 34), and thus fulfils the requirements of the individual whoneeds to be ‘protected’ and ‘sealed off’ (1993: 38). Whilst these are highlycomplex arguments, they are, nevertheless, broadly convincing.

Careful scrutiny of the ethnographic literature also serves to highlight theculturally as well as historically-specific nature of the ‘bounded’, ‘somati-cally sealed’ body of the contemporary Western individual. Cross-culturalcomparison demonstrates that in societies where relationships are not gov-erned by capitalist and industrial modes of production, persons, bodies,and bodily processes are constructed, conceived and evaluated in very dif-ferent ways. The work of Strathern, in particular, draws our attention tothe fact that in societies such as Melanesia the person is not viewed as a dis-crete monad, ontologically separate from others, but, rather, as a relationalentity, who is never completely whole, and neither singular nor plural(Strathern 1990). Within such societies, identities are fluid and fragmentary,since it is through a constant flux of gift exchanges that a person habituallyadds to and produces other persons. In effect, persons relate to one anotherthrough various aspects of themselves and not as integrated bounded units.

Both Taylor (unpublished) and Meigs (1984) have demonstrated that incultural settings where personhood is conceived of as permeable and plural,bodies are, likewise, constructed and experienced as porous and uncon-tained. For example, Meigs describes how amongst the Hau of theHighland of Papua New Guinea, identity is generated and defined more in

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terms of fluids and scents than in terms of external anatomy. The Hau con-ceive of emissions from the body (such as sweat, vomit, excreta) as infusedwith a person’s ‘self’ and as carriers of the owner’s essence (1984: 111).Consequently, persons may relate to one another through their body fluids;a man, for example, smears his sweat, oil and vomit over the bodies of hisreal and classificatory kin, since such substances are believed to be ingestedthrough the pores of their skin and to cause growth (1984: 109). TheRwandans studied by Taylor, likewise, conceive of bodily emissions asextensions of the person. Taylor, for example, describes a ritual in which anew born child is presented to members of the family and local communityfor the first time. During the ritual all the children present are asked tobestow a name upon the new-born. The children are then given a mealtermed ‘to eat the baby’s excrement’ since the food they consume is mixedwith a small amount of the baby’s faecal matter. For Rwandans this ritualcelebrates the fact that the baby’s body has been found to be an open con-duit, an adequate vessel for perpetuating the process of ‘flow’. As Taylorsuggests, ‘in a sense, the baby’s faeces are its first gift and the members ofhis (sic.) age class are its first recipients. The children at this ceremonyincorporate the child into their group by ingesting one of his bodily prod-ucts’ (unpublished paper).

Clearly, in cultural contexts where persons are not thought of as having asingular authentic identity mapped onto a singular body, substances emit-ted from the body – whether they are attributed a positive or negative value– are not thought of as ‘waste’ or ‘dirt’ in the same way as in contemporaryWestern paradigms (Meigs 1984: 112, Douglas 1984: 121). Indeed, asCorbin has emphasised, the contemporary Western perception of bodyodours and body substances as ‘filth’ (i.e. something to be avoided and dis-posed of) must be understood as stemming from a new ‘spatiality of thebody’, which has developed in parallel with the emergence of the concept ofthe individual (1986: 61). It is highly significant, as Corbin further notes,that ‘hygiene reforms’ geared to ‘privatising human waste’ and ‘deodoris-ing’ public and private spaces predated Pasteur’s germ theory of disease,but occurred concurrently with the early stages of the historical develop-ment of individualism.4 Much the same observation is, of course, made byElias who suggests that the closure of the body, achieved through the isola-tion of natural functions from public life, was originally grounded in‘moral’ concerns, and only later came to be understood as necessary for‘hygienic’ reasons (1994: 123). In other words, advances in science and med-icine cannot be accorded a deterministic role in the development of modernWestern ‘hygiene sensibilities’; instead we should understand these sensibili-ties as being essentially symbolic in nature, stemming, in the first instance,from the construction of the person, and the body, as self-contained,bounded entities.5

It is now possible to understand why unbounded patients weresequestered within the hospice. As the above analysis serves to demon-



strate, within the context of contemporary Western paradigms, theunbounded body is perceived symbolically both as a locus and a source of‘dirt’; as ‘matter out of place’ (Douglas 1984: 35). Hence the repulsion car-ers often expressed towards caring for unbounded patients, and managingtheir body secretions and emissions, within their own homes. It is, indeed,no coincidence that patients, carers and staff members alike often employedanimal metaphors to describe and account for the experiences of‘unbounded’ patients. Recall the following quotes: ‘you wouldn’t put a dogthrough this’; ‘he smelt like dog shit’; ‘I’ve worked on a pig farm and notsmelt anything as bad as this’. The association between unbounded patientsand ‘fetid’ animals festering in their own dung was very evident in my field-work observations. Returning to Douglas’s argument that ‘dirt’ offendsagainst ‘order’, it thus becomes evident that contemporary hospices serve toremove patient’s dirt, and the patient as dirt, from mainstream society.

The unbounded body and the loss of the person

The above discussions also throw light upon why the severely unboundedpatients I observed within the hospice evinced, and experienced, a total lossof selfhood. As I have demonstrated, the bounded, sealed, isolated bodyhas become central to constructions of selfhood and identity within thecontemporary Western context. Hence, it could be argued that unboundedpatients fall out of the category of personhood by virtue of their lacking thecorporeal capacity for self-containment. It has, indeed, been recognisedwithin the social scientific literature that bodily closure – achieved throughcontinence – is one of the key criteria upon which entry into ‘full person’status is now gained and sustained within contemporary Western society.Hockey and James, for instance, have noted that one of the central markersof a child’s progress from infancy to maturity is the ability to control boweland bladder functions (1993: 85).6 In a similar vein, Mitteness and Barkerhave observed that incontinence amongst elderly people is frequentlythought to symbolise, ‘that the elder is no longer an adult person but is onthe road to the ultimate in disorderliness and decrepitude, to becoming anon-person’ (1995: 206).

Discussion

A substantial literature argues that death and dying are one of our maincultural taboos within contemporary Western society (Aries 1974, 1981,Gorer 1965, Moller 1996). Within this framework the contemporary hos-pice movement, despite its own overt goal of humanising the dying process,is frequently understood as a further exemplar of the widespread socialdesire to sequester and hide the processes of death and dying from the

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mainstream of social life (see, for instance, Aries 1974, Mellor 1993,Hockey 1990: 156, Feifel 1959). My analysis, however, suggests this inter-pretation is far from adequate since, as I have already illustrated, hospicesdo not veil the dying process per se; rather they have come to sequester aparticular type of dying and a particular category of patient; namely, onewho is disintegrating and has a body which is unbounded.

The above observations thus lead me to suggest that contemporary hos-pices in fact employ one set of taboos, namely their stereotype as ‘houses ofdeath’ (Kastenbaum and Aisenberg 1974) or ‘little pockets in which ourculture hides the terminally ill and muffles the voice of death’ (Scott 1994)to veil a second more pertinent set of taboos, namely those associated withthe way in which a number of patients admitted to hospices actually deteri-orate and die. Issues of dirt, decay, disintegration and smell are rarely, ifever, written about by hospice professionals or covered in media represen-tations of hospice care. Rather they are ‘glossed over’ as ‘symptoms’ requir-ing ‘control’. Hospices practise a type of care now termed palliative.Palliative care is formally defined as:

active total care offered to a patient with a progressive disease and theirfamily when it is recognised that the illness is no longer curable, in orderto concentrate on the quality of life and the alleviation of distressingsymptoms within the framework of a co-ordinated service (StandingMedical Advisory Committee 1992).

As Scott points out, however, the actual word ‘palliative’ is derived from theLatin noun pallium, meaning ‘cloak’. Palliate means, quite literally, ‘to coverwith or as with a cloak . . . to hide, conceal, disguise’ (1994: 37). My field-work experience suggests that the latter understanding and use of the term ismuch more salient in understanding the contemporary role of hospices.

In this respect, the hospice could be understood not simply as a liminalspace but rather as a ‘no place’; in the sense used by Vialles in her discus-sion of the development of the modern abattoir in France. For Vialles theconstruction of the abattoir as a ‘no-place’ resulted from ‘the profoundshift in sensibilities with regard to such realities as death (human and ani-mal), suffering, violence, waste and disease’ (1994: 19). These ‘realities’became something that the ‘general public neither needs nor wishes to know’(1994: 22 – emphasis added). Hence the slaughtering of animals became aprocess confined within the abattoir; something that ‘must be invisible (ide-ally: non existent). It must be as if it were not’ (1994: 22). Understandingthe hospice as a ‘no place’ i.e. as a space within which the taboo processesof bodily disintegration and decay are sequestered, allows it to be under-stood as a central part of contemporary Western culture. Setting these phe-nomena apart from mainstream society enables certain ideas about living,personhood and the hygienic, sanitised, somatically bounded body (Meyer1991: 265) to be symbolically enforced and maintained. It is perhaps no



coincidence that the hospice where I conducted my fieldwork was locatedon the site of the city’s former ‘isolation’ or fever hospital.

It is not surprising, therefore, that the ‘dirty processes’ palliated withinthe bounded setting of the hospice, proved to be very disturbing and upset-ting to the patients and those witnessing their deterioration and eventualdeaths first hand. It was not uncommon for relatives to suggest that theywere more distressed by the way in which the patient died than by theactual death itself. For example, Deborah’s daughter (Deborah was theother patient discussed above who had a fistula), pointed out that hermother was 79 and had already had a good, long life. However, the daugh-ter was having great difficulties coming to terms with the ‘difficult and dirtyexit’ her mother endured. She didn’t feel her mother had ‘any dignity’ at theend. A similar comment was proffered by the husband of another patient inthe hospice, Claire, who had advanced breast cancer and gross lym-phoedema in her arms and legs. He frequently pointed to the ‘brutal’ way inwhich Claire’s cancer was eating her body away. In one particularly emo-tional outpouring he told me that he’d been in the armed forces for seven-teen-and-a-half years and had witnessed many deaths. Yet, he had neverseen anything quite so ‘cruel and disgusting’ as what was happening to hiswife. The husband of another patient suggested that it would have beenmuch easier if his wife had been run over by a bus than to see her ‘deterio-rate and rot away so slowly’.

The above discussion throws a new light upon the function of the con-temporary hospice movement, together with providing deeper insights intowhy hospice/palliative care is largely confined to patients with advancedcancer who experience difficult symptoms. It also points to an inadequacyin the sociological and philosophical literature on death and dying. This lit-erature builds its theoretical paradigms upon assumptions of homogeneouscategories such as ‘the dying patient’ and ‘the dying process’ (see Elias1985, Hockey 1989, Aries 1987). To explain the marginalisation of patientswithin hospices and other institutions simply by the fact of their ‘dying’ istotally unsatisfactory. Rather, this paper points to the importance of con-sidering the body and the processes taking place within it and upon its sur-faces as a central and reflexive part of analysis.

Address for correspondence: Julia Lawton, Department of Anthropology,University of Cambridge, Free School Lane, Cambridge, CB2 3RF email:[email protected]

Notes

1 Taylor notes that ‘caring for dying people at home appears to be a much cheaperservice, at between one-quarter and one-third the cost of an in-patient bed’(1983: 15).

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2 Respite admissions occur for social rather than medical reasons – enabling thepatient to have a break from his/her carers, and to give the carer a break fromlooking after the patient.

3 Oedema occurs when a patient’s lymphatic system becomes blocked. Lymphfluid accumulates in the limbs causing them to become very heavy and swollen.

4 Corbin notes that public health ventures began in the seventeenth and eigh-teenth centuries in France (1986: 157), whereas Pasteur’s discoveries did notbecome widespread until the 1880’s (1986: 223–24). See also Cartwright (1977).

5 Nevertheless, there are some situations in which bodily unboundedness and bod-ily substances are not viewed negatively. For instance, people are not generallydisgusted by exchanging saliva during kissing, and having contact with otherbodily fluids during consensual sexual intercourse.

6 A paradox remains: babies and young infants also have unbounded bodies andare excluded from the status of full personhood, yet they are not subjected tocontemporary sequestering practices. Part of the reason why unboundedpatients are placed within hospices could thus be explained by the fact that theycontradict contemporary systems of social classification. Whilst unboundedpatients have fully grown (i.e. adult bodies), their bodies simultaneously behavein a way thought of as ‘child-like’ (see Hockey and James 1993: chapter 3). AsDouglas suggests, anomalous situations and uncomfortable facts which refuseto be fitted in are ‘ignored’ or ‘distorted’, so that they do not disturb establishedassumptions (1984: 36–7).

Acknowledgements

I am very grateful to Susan Benson, Sarah Green, Charlotte Carr, CatherineAlexander and Geoffrey Woodcock for their comments on earlier versions of thispaper. I am also indebted to New Hall, Cambridge for funding the doctoralresearch upon which this paper is based.

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Contemporary Hospice Care: the Sequestration of the Unbounded Body and 'Dirty Dying

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