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Dying in Public: The Nature of Dying in an Acute Hospital SettingDavina Porock a; Kristian Pollock a; Fiona Jurgens a

a School of Nursing, The University of Nottingham, Nottingham, United Kingdom

Online Publication Date: 01 January 2009

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Dying in Public: The Nature of Dyingin an Acute Hospital Setting

DAVINA POROCK, KRISTIAN POLLOCK, and FIONA JURGENSSchool of Nursing, The University of Nottingham, Nottingham, United Kingdom

Despite the assumption that the home is the preferred place of death,most people will die in institutional care, specifically in acute hos-pital wards. Inevitably, this relatively public setting puts the privacyand dignity of the dying patient and grieving visitors at consider-able risk. Our study used observation of practice and staff inter-views to describe the process of recognizing, communicating, andmanaging dying on an acute medical gerontology ward in a largeteaching hospital in the United Kingdom. The particularly publicnature of hospitals in the United Kingdom is critically examined inthe light of privacy as a fundamental component of maintainingdignity and the “good death.”

KEYWORDS Palliative care, older people, hospital, NHS, dying,end of life care, place of death, co-patient

INTRODUCTION

Although the home is widely believed to be the most appropriate and pre-ferred place of death (Department of Health, 2000, 2003a, 2003b; Stajduhar,Allan, Cohen, & Heyland, 2008; Thomas, Morris, & Clark, 2004), the realityis that death in contemporary Western society predominantly occurs in theacute hospital setting. More than 80% of all deaths in the United Kingdomoccur in institutions, 60% in acute hospitals, 20% in nursing homes, and 4% ininpatient hospices (Office for National Statistics, 2005). In the United States,more than 70% of deaths occur in institutions, with 48% occurring in thehospital and 25% occurring in nursing homes (Centers for Disease Control,2002). Furthermore, death is more frequent in older adults, with more than67% of all deaths in the United Kingdom (Office for National Statistics, 2005)

Address correspondence to Professor Davina Porock, RN, PhD, School of Nursing,A-Floor QMC, Derby Road, Nottingham, UK. E-mail: davina.porock@nottingham.ac.uk

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and 57% of all deaths in the United States (Center for Disease Control, 2002)occurring in people over 75 years. Given the increasing likelihood of deathamong the old and very old, it is inevitable that many people will requireinstitutional care in the last stages of their life (Thomas, 2005). Hospitalsand nursing homes, to a lesser extent, will remain the most likely placeof death for most of the population within the foreseeable future (Ahmad& O’Mahony, 2005; Costello, 2004; Gomes & Higginson, 2008; Wittenberget al., 2006). Consequently, it is of great importance that these institutionsachieve excellence in their provision of end-of-life care. The findings hereare the first to be reported from a pilot study, the purpose of which was toidentify the processes of recognizing, communicating, and managing dyingin older people in one ward of an acute teaching hospital in the NationalHealth Service (NHS) through observations of practice and interviews withhealth professionals and support staff. During the data collection, we werestruck by the public nature of care in the hospital setting and thus the publicnature of dying and death. The final scenes of life were played to an audi-ence of strangers, far from the picture of domestic bliss associated with theidealization of home death (Exley & Allen, 2007).

This raises the following questions: How is privacy, a central element ofa good death, achieved in a public space? What are the implications of lackof privacy for the experience of dying for patients and bereaved relatives?To start to answer these questions, we will report on our observations ofcare and dying in the acute hospital setting. Then, we will explore the waysin which the reality of care maintains and modifies the ideal combined withthe interview data on the staff’s perspectives on the care of dying patientson the ward. Clarity in identifying and defining privacy in hospital dying anddeaths may allow health professionals the ability to be more aware of theiractions, given the exquisite challenges of providing care for dying patientsand their families in a public space. See Box 1 for a summary of the NHS.

BOX 1 Background to the NHS

The National Health Service (NHS) is a universal health scheme providing health care frombirth to death for all citizens and permanent residents in the United Kingdom. The NHS,which is free at the point of service, is funded through the taxation system in the UnitedKingdom and is supported by a bureaucracy that aims to ensure equity and parity acrossthe nation in terms of access to and standards of care. There is a relatively small amountof private health care funded by health insurance in the United Kingdom. The NHS fundsand supports research as well as the education and continuing education of healthprofessionals.

A feature of the NHS is the comparatively heavy reliance on government policy to directindividual clinician’s care and create services for users and carers of the system. In recentyears, there have been several policy initiatives specifically directed at palliative and endof life care for all ages, diseases, and conditions, most of which aim to shift care fromhospitals to the community—either home or nursing home.

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METHODS

A qualitative approach was taken using mixed methods of non-participantobservation of ward activities and semi-structured interviews with staff,which took place over a 10-month period between January and October2007. Participants were interviewed once formally but may have interactedwith the researchers many times as part of the observation study.

Sample

The study was conducted on one 28-bed medical gerontology ward of a largeacute NHS teaching hospital in the United Kingdom. All staff working on theward was eligible to participate. The final sample comprised 31 respondentsfrom a wide range of professional and support groups (Table 1). To maintainconfidentiality, interview quotes will be attributed to general groups. Namesof patients and relatives are pseudonyms, and some case details have beenmodified to ensure anonymity. The local NHS Research Ethics Committeeand the Hospital Trust Research and Development Department approvedthe research.

Data Collection

Qualitative interviews were conducted using a similar approach to that em-ployed in previous research by two authors (Parker Oliver, Porock, & Oliver,2007). Respondents were asked to recall and describe a recent (unnamed)case of death on the ward. This account provided a means of opening up the

TABLE 1 Study Respondentsa

Staff Grade Male Female Total

Consultant (attending physician)∗ 2 0 2Registrar (specialist training registrar)∗ 1 0 1Senior House officer∗ 2 0 2Junior House officer (intern)∗ 0 1 1Ward Sister (charge nurse)# 0 2 2Staff nurse# 2 5 7Student nurse# 0 2 2Health care assistant+ 0 6 6Physiotherapist∼ 2 0 2Occupational therapist∼ 0 2 2Speech and language therapist∼ 0 1 1Discharge coordinator+ 0 1 1Ward receptionist+ 0 1 1Ward housekeeper+ 0 1 1Total 9 22 31

aTo preserve confidentiality, quotes will be attributed to general groups as indicatedbelow: ∗ = doctor; # = nurse; + = support worker; ∼ = allied health profession.

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topic for wider discussion and consideration of further open-ended questionsregarding respondents’ experience of recognizing dying and caring for thedying. The content of the earlier discussions shaped the issues addressed insubsequent ones (Strauss & Corbin, 1998). With permission, interviews weretape recorded and fully transcribed for thematic analysis using the principlesof grounded theory (Charmaz, 2006; Strauss & Corbin, 1998).

Non-participant observation was conducted in several naturally occur-ring situations on the study ward: shift handover (report), multidisciplinarycare conferences and ward rounds, general observations of ward routine,and communication (e.g., sitting near the ward clerk or at the desk of a sixbed bay). Field notes taken during the observation were made in a discretemanner where appropriate and written up in detail after the observation.

Analysis

The qualitative software program NVivo7 (QSR International, Melbourne)was used to facilitate the process of data organization and retrieval and thecross comparison of interviews and observation data (Bazeley & Richards,2000; Gibbs, 2002). Thematic analysis was developed through an iterativeprocess of reflection, scrutiny of the notes and transcripts, and discussionbetween the researchers. This process of mapping, interpretation, and subse-quent theory development was influenced by the original research objectivesand the themes that emerged from the data themselves (Pope, Ziebland, &Mays, 2000).

FINDINGS

The ward where our study was conducted had four six-bedded bays open tothe working area of the ward and four single occupancy side rooms. Therewere bathroom and “service” areas (linen and drugs rooms and a sluice),separate offices for the doctors and Sisters1, and a staff room for coffee andmeal breaks. A small patient dining area led off from the main ward. Therewas also a reasonably sized lounge and television room for patients to useand to take their visiting relatives, but it was used inferquently. The wardwas mixed occupancy, with two bays each for male and female patients(Table 1).

THE PUBLIC NATURE OF CARE IN HOSPITAL

On entering the ward, the public nature of its activity was immediatelyapparent. The smells and sounds of bodily function frequently welcomedthe visitor, immediately making public what is usually private. In each row,

1 Sisters are senior nursing staff and include ward managers and charge nurses.

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beds were positioned close together, separated by only a few feet (thewidth of a bedside cabinet and a chair). Each bed area had thin cottoncurtains hung from a rail attached to the ceiling. The curtains were used toscreen patients during procedures or to receive care, which was consideredprivate. The curtain gave scant visual privacy, especially because actionscould sometimes be seen as silhouettes and sounds and voices were clearlyaudible. Most of the time, the curtains were left open and patients wereencouraged to spend at least part of each day sitting up in their chairrather than in bed. In either case, patients often sat or lay exposed invarious degrees of undress and some tasks were performed in public view,such as checking or inserting an intravenous (IV) site, assessing vital signs,administering oral or IV medication, or taking blood.

Among this elderly population of patients, there was a considerablerange of illness conditions—from the semi-comatose state of acute illness ordying to reasonably functional, ambulatory patients on the point of discharge.Some patients, especially those suffering from dementia, could be noisy andagitated. Many looked frail, ill, and abject. There was a wide variety offunctional, cognitive, and sensory impairment; the most common of thesebeing deafness. Many loud and clearly enunciated conversations occurredon the ward at any time throughout the day, clearly audible to staff, visitors,and other patients and obviously limiting the privacy of the participants.

The public nature of the patient’s management of the un-well elderlyhuman body varied depending on the time of day. The daily routine of theward began with the handover from the night staff to the day staff. Thisoccurred in a group discussion around the central reception desk. After han-dover, the nurses and health care assistants would begin to move around,checking notes and information and then gradually moving into their desig-nated bays to begin getting patients ready for breakfast, making beds, andproviding assistance with toileting, hygiene, and other general nursing care.Over the course of the morning, the noise and bustle increased as morestaff of various types, including porters, cleaners, food servers, and medicaland allied health professionals (e.g., various grades of doctors from consul-tant to medical student, phlebotomist, hospital administrator, chaplain, socialworkers, physiotherapist, speech therapist, occupational therapist, dischargecoordinator, and medical record clerk), came to do their work.

At approximately 9 a.m. each morning, a multidisciplinary team walkround would begin. Usually present were the Registrar, Senior and JuniorHouse Officers, Physiotherapist, Occupational Therapist, Discharge Coordi-nator, and perhaps the Sister in charge of the ward (Table 1). A consultantmight join the multidisciplinary team round, but this was not common. Theround would start in one of the 6-bedded bays and the staff nurse responsiblefor those beds would join the round and provide an overview of the diag-nosis, reason for admission, medical condition, and any issues of concern ofwhich the team needed to be aware. Team members would offer additional

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information from their professional perspectives and discuss discharge, fam-ily support, care package needs, and other matters. The multidisciplinaryteam stood at the end of the bay in a circle and spoke normally to eachother, sometimes pointing or looking at individual patients as the discussionmoved round the occupants of the bay. After all of the patients assigned tothat staff nurse were discussed, the team would move to the next bay andthe next staff nurse would join the round.

Following the multidisciplinary team, a consultant would arrive severalmornings each week and the medical ward round would begin where pa-tients were examined by the doctors and plans made for things such asdiagnostic tests and referrals. The ward Sister would often accompany themedical ward round and the staff nurse in each bay could be called todiscuss certain aspects of care or for information. While the medical wardround was occurring, the nurses would be providing care and administeringmedications, dressings, and treatments as needed. The allied health profes-sionals would go about their assessments of patients and documentation.The phone would be ringing, deliveries would be arriving, and there wouldbe people in the ward reception area talking, writing notes, and using thecomputer; the ward would be bustling with many people about. After lunch,which was served either at the patient’s bed or in the small dining room, theward was open to visitors between 2 p.m. and 4 p.m. Most of the routinepersonal care would have been attended to by then, but two or three times aweek a second medical ward round (with another consultant) would occurat approximately 2 p.m. among the visitors, making the work of the doctorsmore public.

After supper, and as the evening drew on, visitors would come andgo between 6 p.m. and 8 p.m., and eventually all visitors were gone orwere asked to leave around 8 p.m. The ward work gradually slowed and thenurses remained to provide ongoing care, complete documentation, talk, anduse the phone. At approximately 7 p.m., evening handover occurred aroundthe receptionist’s desk with the oncoming night staff. These handovers wereoften noisier than the early morning handovers and sometimes had a moresocial feel. As the night staff took over, the ward began to take on a calmer,quieter feel. Patients were settled in bed, the lights were dimmed, and thestaff spoke more quietly. Even those dealing with the hard of hearing seemedto be quieter as the ambient noise in the ward abated.

Both multidisciplinary team and medical ward rounds were performedin the public space of the ward, with the content of what was being saidoften clearly audible to those in the vicinity, including patients and often theirvisitors. Hushed tones may be used when “sensitive” topics were discussed,such as end of life issues, but this was not always the case and muchof what was said could be overheard by anyone in the vicinity, includingpatients. Talk directed specifically at patients was particularly likely to beheard by others because staff tended to raise their voices, apparently on the

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assumption that the object of their attention was hard of hearing, if not deaf.Such public discussions frequently included content of a personal and, whenit referred to diagnosis and prognosis, sometimes a highly significant nature.The following is an extract from ward observation notes:

Nurse informs medics that two daughters have arrived on the ward.Doctor agrees to see them. Conversation in the middle of the ward.Two daughters sat at a table while cleaner busy around adjacent table.Several doctors and nurse stand around sitting sisters. Doctor starts toexplain that most elderly people with dementia die from pneumonia andnot dementia. Asks how they would like their mother to be treated andexplains that the choices are becoming very limited. Daughter’s eyesbegin to well up. She states clearly that they do not want any heroics iftheir mother has a heart attack, and that this has already been decided.She wants to know what the options are. Doctor suggests that it maybe kindest to allow the mother to die in peace with no pain rather thancontinue with active treatment (antibiotics). Daughters both agree butthey want her fed to the end and kept pain free. Doctor states that hewill note their wishes. This seems a very private conversation to havein the middle of a busy ward with trolleys and cleaners all around. Thedaughters are left welling up and go to see their mum. No assistance isoffered by staff for chairs or cup of tea or anything remotely empathic.Both daughters are clearly fighting back the tears on seeing their mumin bed. Ward round continues in this bay with this family left exposedin the rawness of their newly realized embarkation on a journey towardthe loss of their mother. It is surreal yet everyday.

The ward is clearly a public place where the conventional boundaries ofprivate and public affairs are blurred. Auditory privacy is non-existent andvisual privacy is largely an illusion created, for the most part, by the thincurtain. Although the drawing of curtains might conceal the actual eventof a potentially undignified or embarrassing nature being given, the act ofdrawing them signaled to all occupants that something of a private naturewas occurring. This in itself could be a threat to dignity because it drawsattention to the indignity happening behind the screen. For the most part,the curtains remain open day and night and conversations, activities, andtreatments (almost everything) were said and done in front of anyone whomight be in the bay or work area of the ward.

PLACE OF DEATH IN HOSPITAL

Elderly patients were admitted to the ward because they were in medicalcrisis, with common diagnoses being chest or urinary tract infection, collapse,falls for investigation, or acute exacerbation of chronic illness. The purpose

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of being admitted was to resolve the crisis as far as possible and dischargethe patient to a rehabilitation unit, nursing home, or personal home with apackage of care to support continuing care in the community. Despite this,it was not uncommon for patients to die on the ward. There were typicallyone or two deaths each week. Dying was not always recognized and therewere examples of sudden, unexpected deaths on the ward. When imminentdeath was recognized and acknowledged, a decision had to be made as tothe place of dying—whether it was possible to get the patient home, whetherher or she could be moved to a side room (if one was available), or whetherher or she had to stay on the open bay. The decision about place of deathcould be a real dilemma for all. As a nurse noted:

Yes, but only with those people that we sort of can predict. I mean,where possible, we will say to people; do you want us to move youinto a side room? If we’ve got a side room and we can, ‘cause obviouslythat’s a private room for them. And I think that’s a hard one, especiallywhen you face that as a relative by saying, My relative is dying, I can’tmanage them at home, or I wouldn’t want them to die at home . . . but Idon’t really want them to die in a bay full of five other men who are allscreaming blue murder and talking rubbish and wandering around so it’s[a question of] what’s best for the patient? And what would they want? It’squite a hard discussion. Also, if people decide they want to go to nursinghomes, the potential of them dying in the ambulance, which obviously isnever very nice, or the thought of it, certainly. I’d rather have my relativedie on here with five mad men than dying in an ambulance half way upthe ring road.

Although most staff stated that it was desirable to move the dying patient toa side room if they were staying in hospital, the issue was not clear-cut. Asa nurse observed:

It [the move to a side room] probably does [cause distress] for otherpatients if they’re in the bay. Especially if they’ve been here for a whileand they’ve got to know that patient and can see them going downhillas well. And for family, because, sometimes, if they’ve [the dying person]got a big family, they all want to come in [to visit patient on the bay]and, you’re trying to tell other patients’ relatives that they can’t come in.I suppose in that instance it’s nice for them to be in a side room. Butthen, are you . . . shutting them out? And if they’re aware that they’ve justbeen left, you know, in a room on their own.

As the previous quote suggests, the advantage of “ensured” privacy in theside room was countered by a concern that the patient may be lonely and anyproblems that might arise could be missed because there was no additionalresource to nurse dying patients in a side room. As a support worker noted:

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I’m never quite sure [if the side room is best] because, if there’s nothinground them . . . then they’re just in that room and . . . you don’t get inas often because, if you’re in the bay, you can see all the patients allthe time so if there’s a problem that arose in the side room . . . there’snobody there, but . . . it’s better for the relatives ‘cause they’ve got thatprivacy, haven’t they; they can sit around.

These quotes illustrate a point of tension regarding where dying should occuron the ward. Central to that discussion is the issue of privacy. Because deathoccurs so openly on the ward, the removal of the patient to a side room canbe a significant indicator (to the dying as well as the co-patients) that deathis imminent in a similar way to the act of closing the curtain signaling thatdignity is at risk. Whether privacy was even necessary for good end-of-lifecare and the appropriateness or desirability of hiding the dying process fromthe ward could be disputed. As one doctor questions:

Do you get more comfort from that [being in a side room]? Is [dying] soawful that you have to put your patients in a side room? And is it worseif someone dies in the bed next to you or if the person in the bed nextto you gets moved down into the side room when they die?

In some cases, both staff and relatives considered the community setting ofthe open bay to have been an appropriate place of death and that was alsopreferred by the patient. As one nurse observed:

I think he wouldn’t have liked a side room anyway ‘cause he did liketo come out and see what was happening. . . . He was doing that rightup until, he was quite active and sort of last night, saw him talking topatients and stuff like that, he would have felt very lonely in a side roombecause his family weren’t here all the time.

Relatives and patients could benefit from the camaraderie and mutual sup-port that could be provided by professionals, residents, and visitors whocomprised the community of the ward. As a nurse observed:

And sometimes it [privacy] is not what the family wants. In which case,in the ward in a bay can be the most appropriate place, you know, ifthey’ve struck up relationships with other patients’ relatives and patientsin that bay, they quite often don’t want them moved to a side room, inwhich case it can be dealt with very well and appropriately.

Acknowledgement that some patients and families might prefer the socialsetting of the ward to the secluded privacy of the side rooms could notoverwrite substantial concerns about the impact of lack of privacy on theexperience of dying. The staff was clearly committed to providing the best

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possible care for all patients, including those nearing the end of life, andwas reluctant to concede that their efforts could be undermined by theorganizational and environmental constraints of the workplace. However, theglaring reality that a busy open ward was not a suitable environment, eitherphysical or emotional, for those approaching death could not be denied. Astwo nurses and one support staff worker observed, respectively:

I mean, it’s so busy sometimes, that you just, you sometimes hear thingsgoing on and you think, “There’s relatives [who] sat with a dying personbehind there and this is not an appropriate conversation to be having,”but there’s no choice sometimes ‘cause we’ve still. . .got to get on withour job; we’ve got to look after the other patients in that way.I’m clearing all the equipment away, all the IV stuff, all the suctionequipment and stuff, everything. I was just clearing it all away, andit would have been kinder to the relatives [if we] had. . .a side roomjust for that because they’re behind the curtain and it’s not soundproof,[laugh] and they’re, you know, they’re going through something very,very emotional.And let’s be honest, wards are quite difficult places for your parents todie when you want them at home. It’s not the same. It’s impersonal really,with five other beds in the bay . . . [and] people rushing about. ‘Causethe thing is, your dad’s dying but I’m afraid everybody else is busy. Andthis is the awful thing, see both sides of that you know. Say, if somebodywas dying now, and the girls (sic) started making a noise, we’ll oftensay; “Shhh, keep your voice down” because it’s important. ‘Cause theydon’t want to hear laughter, do they, when their mum’s dying? But youdo have to carry on.

The tension between the ongoing everyday life of the ward (the banter ofnurses, the noise and commotion caused by noisy, confused patients, theradio, and the call-bells sounding), which might contribute to a sense ofcommunity and vitality for most participants (lay and professional), and thecalm and peaceful environment felt to be appropriate for the gravity of dyingpresents a great challenge. The passivity and inertia of the dying patient isat odds with the normal pace of ward activity. However, as we have seen,the silent, sterile, isolated, and often solitary space of the side rooms was notnecessarily considered a more desirable alternative, especially for patients.

THE PUBLIC NATURE OF DYING IN A HOSPITAL

The management of dying patients and their families could be more smoothlyaccomplished if the time and proceeding of the death could be anticipatedwith some accuracy. As two nurses noted:

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When we know that they’re dying, if it looks as though it’s very soon . . .

we pull the curtains round and . . . if we called the family in, we’d pullthe curtains round so that they’ve got privacy.I cleared it [equipment] all away and made him look really nice. He wascomfortable, you know, everything was fresh, made sure all the sheetswere . . . you know [clean] . . . and everything.

Unexpected events, such as lingering or sudden death posed extra difficul-ties. The former could be grueling for all concerned, and the latter highlyvisible. Many cues were available to alert co-patients (other patients sharingthe bay) and their relatives that death in a nearby bed was imminent—openand extended visiting, extensive use of the curtain, dismantling and removalof bedside equipment, lack of obvious assessment (vital signs) or treatmentby staff, or lack of food and water. Staff reported that this prospect and itsaftermath were rarely discussed with co-patients directly—deaths occurred“in public” on the ward but without acknowledgement by staff. The impactof this experience on co-patients was rarely recognized or addressed. As onenurse observed:

I don’t think we’re very good at that. I think our response tends to beto draw the curtains round and almost pretend it’s not really happening;which must be incredibly difficult [for the other patients]. I’ve had patientsbe extremely upset before now. I was on a night shift once and a patientdied very unexpectedly, I’d literally gone to do his IV antibiotics in themorning and noticed that he was dead. And the bloke in the bed oppositewas in floods of tears and blaming himself and saying “I should havenoticed” and I was saying to him, “You know, you couldn’t possiblyhave known.” Looking after him afterwards was very difficult because hewas just blaming himself and was so distraught and that kind of broughtit home to me that, actually, they do notice, they notice that that patientwas in the bed, we draw the curtains round and the next thing theyknow, that bed’s empty. They must realize and yet we don’t, I don’tthink we’re very good at acknowledging that it must affect them.

The extended presence and sometimes large number of visitors attending apatient on the ward was a cue to all that dying was imminent. Ward rulesabout visiting hours and the number of visitors permitted were relaxed whena patient was known to be dying. The commitment to accompanied deathis strong, and many relatives made great efforts to be with their loved oneat the end of life. Staff also felt strongly obligated to provide such companyfor dying patients when no relatives were present or available. This is onereason for their concern about the isolation of patients placed in side rooms.On some occasions, as many as four or five visitors would be crowdedaround a bed in the open bay, far too many to be contained within theconfines of a flimsy curtain. Given the constraints of space on the ward,

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such vigils were far from private or intimate occasions for the visitors andat the same time risked imposing on the privacy of other patients on thebay. For relatives, the interactive challenges of visiting a sick elderly patientare already considerable, quite apart from having to handle awareness thatsomeone else is dying in the next bed.

During their last days and hours, many dying patients were in a co-matose condition and probably had little awareness of their surroundings.However, for those who were aware and for visiting relatives, the lack of pri-vacy and protection from being overheard, in particular, was not conduciveto the conduct of intimacy, either physical or emotional. For relatives visitingco-patients who were dying on the open bays, the pretence of privacy andcertainly a visual screen could be maintained by drawing the curtains aroundthe bed area. A support staff worker noted:

Yes, ‘cause she’s, it was near the window as well so she [the wife ofdying patient] could just pull the curtain round. You know. She oftenused to sit there . . . [and] just hold him.

Others, however, maintained extended vigils with their dying parents in fullview of the open ward. The following was taken from ward observationnotes:

During the time I was there, Mrs. Parker’s daughter stayed with her, stand-ing over her, stroking her hair, and trying to comfort her. The daughterwas clearly working to contain her emotion—though generally steadfast,once or twice I saw her falter. At one point she asked a passing nurseif her mother’s intermittent leg restlessness was caused by pain in herlegs but received no clear reply. The nurse did not speak to her (on herway to fetch another patient from the toilet) nor did she return later. Mrs.Parker was lying hunched up and looking miserable—apparently beyondwords but conscious and with her eyes open, sometimes whimpering. Ifelt that it was absolutely wrong that she and her daughter should be lefton display on the open ward.

DISCUSSION AND CONCLUSION

To the researchers, the exposure of such personal distress and private griefwas shocking and violated deeply engrained cultural norms regarding theprotection of personal dignity and intimacy. During our observations, overtexpressions of grief or emotional distress were rare. Most patients and vis-itors maintained a high degree of self control, in the effort both to protectthemselves and to collaborate with staff in the project of maintaining insti-tutional and professional “face” (Goffman, 1972). The challenges of holdingpersonal and private conversations in a public space are considerable under

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any circumstances but especially so when one party to the interaction may beseverely ill, confused, or wholly uncommunicative. Visitors were under pres-sure to demonstrate their interactive competence within the public sphereof the ward while at the same time being required to engage in intimate andaffective exchanges with their relatives, which ordinarily are kept deeplyprivate. In terms of how visitors are “seen” to “do visiting” relatives and pa-tients, they are vulnerable on two counts—through overt self-disclosure andthrough apparent emotional disengagement. In addition, patients and visi-tors have worked simultaneously to maintain some semblance of “normal”interaction with other patients, visitors, and staff who may be present. Rel-atives varied in terms of the apparent ease with which they dealt with suchchallenges. However, the constraints on space and privacy must inevitablynegatively impact the quality and intimacy of the scarce and significant emo-tional time that relatives may have with severely ill and dying patients onthe ward.

Ministering to patients’ and relatives’ “psychosocial needs” has been in-ternalized as an important component of the professional role, particularlyin relation to end-of-life care (Gastmans, 1999; Jack, Gambles, Murphy, &Ellershaw, 2003; Lavoie, Blondeau, & De Koninck, 2008; NICE, 2004). How-ever, as Costello (2001) and Seale (1998) noted, in practice nurses caring forolder dying patients focused primarily on providing physical care rather thanpsycho-social support. In the current study, interview respondents stressedthe importance of providing such support, though accounts and illustra-tions of how this was provided were generally lacking. Our observationsincluded episodes in which professionals displayed great skill and sensitiv-ity in managing difficult and emotionally charged encounters with relativesand patients, both in side rooms and the open ward. However, these wereuncommon. Routine interactions rarely exhibited emotional engagement be-tween staff and patients. These may have occurred more frequently outsideof the observational frame. However, for professionals and patients, the openward was not conducive to the disclosure and extended discussion of inti-mate thoughts and feelings. Thus, a further consequence of the public natureof the ward is that it inhibits the capacity for the staff and patients and theirrelatives to pursue emotional disclosure and it closes off the opportunityfor providing the psychosocial support, which is supposed to constitute asingular part of quality professional care (Gastmans, 1999; Jack et al., 2003;Lavoie et al., 2008; NICE, 2004).

Western culture prioritizes autonomy and self control (both physical andemotional) as defining characteristics of a functioning and relational self. Theprivacy and containment of the home affords protection from the violationof identity—and suffering—that follows the public spectacle of physical andmental degeneration and lost control (Exley & Allen, 2007; Lawton, 2000).Dying in particular has come to be regarded as a private matter, and privacyas a condition of the maintenance of dignity attending the dying person. The

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Dying in an Acute Hospital Setting 23

modern construct of the “good death” originated in the hospice movementand subsequent development of palliative care as a specialty. This is charac-terized by freedom from pain, emotional accompaniment, open awareness,and dignity (McNamara, 2004; Randall & Downie, 2006; Walters, 2004)

The dominant ideology stresses patient choice as a quality criterion,along with an assumption that this would be expressed in the home asthe preferred place of death (Stajduhar et al., 2008). Public, political, andprofessional debate on what constitutes a “good death” has been prominentin recent decades and is fuelled by the hospice and palliative care movement(DelVecchio Good et al., 2004; McNamara, 2004; McNamara, Waddell, &Colvin, 1994; Randall & Downie, 2006; Seale, 2004; Seymour, Bellamy, Gott,Ahmedzai, & Clark, 2002; Smith, 2000; Walters, 2004; Zimmerman, 2004).Seminal work such as the SUPPORT study (SUPPORT, 1995) has highlightedthe specific problems of creating a good death, particularly in high techenvironments such as the intensive care unit (Costello, 2001; Timmermans,1998). Institutional settings, especially the dehumanized and technologicalnature of the acute hospital ward, are seen as inappropriate and unfortunateplaces in which to die.

However, there is increasing evidence that one reason for patients andcarers to prefer institutionalized care at the end of life is due to the oppor-tunity it affords for the preservation of the social boundaries of personalintimacy with the delegation of personal maintenance tasks to professionalcarers (Exley & Allen, 2007; Gott, Seymour, Bellamy, Clark, & Ahmedzai,2004; McCall & Rice, 2005; Seale, 1991, 1998; Thomas et al., 2004). Thepromise of institutional care is that it can help patients conceal and containtheir bodily “unboundedness” and lack of continence (Exley & Allen, 2007;Lawton, 2000) and so maintain their personal dignity and social persona.However, as is evident from our findings, these components of a good deathare not easily achieved in the public space of an open hospital ward.

The impact of space and place and the “geography” of the health careenvironment are generally unacknowledged in health care and have, to date,had little attention in research conducted by health professionals (Andrews,2006). Ardener (1981) observes that once space has been designed andshaped it is not neutral and exerts influence on the people and actions takingplace. The significance of the quality of environment for dying patients andrecognition of current shortcomings in institutional provision throughout theNHS is emphasized in the recommendations of a recent King’s Fund report,which are reproduced in Box 2 (Waller, Dewar, Masterson, & Finn, 2008).This report calls for the Department of Health to develop national standardsfor the environments in which end of life care is provided. The need for stafftraining regarding the significance of environment for the patient experienceof care, the need for flexible responses to patient choices regarding placeof death, and the need for recognition that these may be subject to rapidchange are also emphasized.

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24 D. Porock et al.

BOX 2 Recommendations from “Improving Environments at the End-of-Life”

All settings within which end of life care occurs should provide the following:• A room where the patient and family can be taken for confidential discussions;• The option of single room accommodation designed to engender a feeling of

homeliness where patients retain control over their environment;• Informal gathering spaces and places where families can meet, confer, and talk with

care staff;• Guest rooms where close family or friends can stay overnight with facilities for

catering and internet access;• Appropriate places for viewing the deceased

(Waller et al., 2008, p. 45)

The ward where our study occurred was designed to allow for maximumopportunity for observation and minimal screening for the convenience ofthe nursing and medical staff. It was not designed for privacy and respect forpatient dignity. The current emphasis on patient choice and dignity within thepolicy commitment to patient-centered care is not easily applied within theconstraints of architecture and environment of general hospitals withinthe United Kingdom (Department of Health, 2005; NHS Confederation,2005). The organizational and geographical demands of space create sev-eral tensions in the care of patients in public that are magnified in thecare of those who were dying. Examples of these conflicts are listedin Table 2.

The management of care that is embarrassing is central to achiev-ing respect for human dignity (Lawler, 1991). Formal awareness of theneed for privacy was commonly found in the interviews with staff as didan acknowledgement that “dignity” was central to the achievement of a

TABLE 2 Tensions of Care and Dying in the Public Ward

Health Care: Goal of Dying: GoalRecovery and Discharge Vs. of Comfort

Hope of treatment vs. Futility of treatmentRecovery, rehabilitation vs. Failure to respondOrientation to the living—laughing, noise,

bustlevs. Orientation to the dying—peace, calm,

quietFast pace—urgency, busyness, task driven vs. Slow pace—waiting, vigil, being thereDying on the open bay—among life, open vs. Dying in the side room—in private,

sequesteredCare on the open bay—community,

supportvs. Care on the open

bay—embarrassment, indignityCare in the side room—privacy, control of

spacevs. Care in the side room—isolation,

stigma (infection)Routine and institutionalised nature of the

workvs. Professional awareness of the need for

privacy and respect for dignityOpen grief and emotional response vs. Public portrayal of coping

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Dying in an Acute Hospital Setting 25

“good” death, but this coexisted with the limitations of routine and theinstitutionalized nature of the work environment. The benefit of having ob-servations of practice along side interviews meant that we have been ableto reveal the “multiple realities” that coexist in the thinking and work ofhealth professionals (Schutz, 1967). The multiple realities of knowing theimportance of privacy and being constrained by the geographic features ofthe ward could occur because it is not nice or easy to acknowledge thatyour work is compromised by something that is not possible to change, inthis case the ward environment. This caused tension for staff between theirawareness of an inability to safeguard privacy alongside professional com-mitment to provide excellent care and a positive experience for patients andtheir families.

Several recommendations arose from the data and discussion presentedhere. First is the issue of communication with patients and relatives in anopen ward, particularly when communicating significant news must be ad-dressed. Increased professional awareness of the extent to which constraintson privacy may undermine the dignity of the dying and violate the personalspace and ontological security of co-patients is a prerequisite for chang-ing and improving practice. There may be practical limitations on alteringthe physical environment of the ward, at least in the foreseeable future.However, there is scope for changing the communicative practices betweenprofessionals and with patients. For example, staff could learn to be morecircumspect when talking about personal issues in public spaces. In addi-tion, arrangements could be made to conduct sensitive discussions of careand prognosis within a private place, even if this means temporarily movingpatients away from the bays.

Within the palliative care philosophy of caring for the dying, the focusof attention is turned to the individual patient and the family. However, ina space shared with strangers, some consideration of co-patients and theirrelatives is needed. Nursing staff should be sensitive to the impact of prox-imity to a dying person and respond accordingly. Even when no side roomis available to move the dying patient, simply acknowledging the imminenceof death and providing co-patients (and relatives) with an opportunity to askquestions and discuss their feelings and concerns about this would consti-tute a powerful form of reassurance and support. It would also humanizethe experience of care in the alien and sequestrated environment of an acutehospital ward. The practical constraints of a difficult working environmentcombine with the diverse, complex, and sometimes competing needs of veryfrail elderly patients to pose enormous challenges for staff in terms of bothprofessional practice and philosophy of care. These call for further empiricalresearch and the development of a theoretical framework to support the im-plementation of a vision of best practice and the highest possible standardsof care that is reconfigured for the particular circumstances of dying patientsin the current day.

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26 D. Porock et al.

Current policy in the United Kingdom emphasizes the importance ofpatient choice in all aspects of health care, including preferences at the endof life. The maintenance of personal dignity is also recognized to be a basicentitlement. This article has highlighted the extent to which the capacityof health professionals to accommodate preferences or maintain personalprivacy and dignity of dying patients and their families is compromised bythe constraints of space and the unsuitable environments currently providedby state-funded hospitals in the United Kingdom. Institutional redesign andrefurbishment is inevitably a major task and long-term goal. Such a programis less likely to be implemented if current assumptions about home beingthe preferred and feasible place of death for the majority of people areperpetuated. The reality is that the majority of patients will continue to diein a hospital. Consequently, there is an urgent need to recognize presentshortcomings in provision and to implement practical measures that can betaken to protect the dignity of dying patients in acute hospital wards. Wehope the current article will make a contribution to this process.

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