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2005 19: 76Palliat MedCatherine Exley, David Field, Linda Jones and Tim Stokes

lay-carers and health care professionalsPalliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients,

  

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Palliative Medicine 2005; 19: 76-83

Palliative care in the community for cancer and end-stagecardiorespiratory disease: the views of patients, lay-carersand health care professionalsCatherine Exley* Centre for Health Services Research, School of Population and Health Sciences, University ofNewcastle, Newcastle upon Tyne, David Field Division of Epidemiology and Public Health, Department of HealthSciences, University of Leicester, Leicester, Linda Jones* School of Nursing, University of Nottingham,Nottingham and Tim Stokes National Collaborating Centre for Primary Care, Division of General Practice andPrimary Health Care, Department of Health Sciences, University of Leicester, Leicester

Primary care plays an important role in delivering care to people who are dying. However,providing palliative care to people dying with conditions other than cancer may be more

problematic, because it may be more difficult to establish an exact prognosis or to identifytheir needs. This article draws on qualitative research, which explored the views of healthprofessionals, patients and their carers about care provided at the end of life. Differencesbetween the care of people with cancer and those with end-stage cardiorespiratory diseasewere found in four main areas: management and progression of disease, communicationand information, health care in the community and awareness of dying. The research showsthat even in PHCTs (primary health care teams) committed to the delivery of palliative care,people dying with end-stage cardiorespiratory disease are less likely than those with cancer

to receive full, and easily understood, information, to be aware that they are dying or toreceive district nursing care. There is an increasing call for palliative care to be extended toall, but further work is needed to develop appropriate packages of care for those dying withconditions other than cancer. Palliative Medicine 2005; 19: 76-83

Key words: cancer; cardiorespiratory; community; palliative care; primary care

Introduction

Primary care plays a significant role in the delivery ofcare to people who are dying, and its role in facilitatingcontinuity of care through cancer services in the UK isaccorded central importance.' Most of the care forpeople who are dying is provided within the patient'sown home, and many dying people and their carers alsowant the patient to be enabled to die at home.2 Despiteincreasing research, there is relatively little publishedabout palliative care provision in the community, espe-

cially with regard to patients with end-stage cardio-respiratory disease.3-7

Address for correspondence: Dr Catherine Exley, Centre forHealth Services Research, School of Population and HealthSciences, University of Newcastle upon Tyne, 21 ClaremontPlace, Newcastle upon Tyne NE22 4AA, UK.E-mail: catherine.exleygncl.ac.uk*Formerly Nuffield Community Care Studies Unit, Division ofEpidemiology and Public Health, Department of HealthSciences, University of Leicester, Leicester.

Edward Arnold (Publishers) Ltd 2005

Most of the palliative care provided at the end of life inthe community in the UK is provided by primary healthcare teams (PHCTs).a Palliative care in this context refersto the total care of the patient and their family by amultiprofessional team, when the patient's illness is nolonger responsive to curative treatment.8 PHCTs are notspecialists in palliative care per se, but rather they canadopt a 'palliative care approach' towards patient care.This is defined as being an integral part of all clinicalpractice, which aims 'to promote both physical andpsychosocial well being'. While such definitions refer toall illnesses, there has been increasing concern about theinadequacy of palliative care for people with terminaldiseases other than cancer.7 12 As with specialistpalliative care services, such as in-patient hospice or

a PHCTs comprise (generally) of doctors (general practi-tioners) and nurses (both practice nurses and those workingin the community - district nurses). In addition, occupationaltherapists, pharmacists and specialist nurses can also contributeto the care provided in the community.

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Palliative care in the community 77

hospital beds, those dying of end-stage cardiorespiratorydisease often have little or no access to palliative care

provided by primary care teams. Providing palliative care

for chronic terminal conditions may be more problematicthan for cancer patients, because it may be difficult toestablish an exact prognosis or to identify their needs.13This paper draws on the results of a larger mixedmethods research study,'4 which sought to establish thechallenges of identifying and meeting the needs of peoplewho are dying in the community of both malignant andnonmalignant disease.

Methods

Ethical approvalEthical approval to conduct this study was granted by theLocal Research Ethics Committee.

Participants: practicesThe research was conducted in two general practices inthe East Midlands in the UK which had developed clearprocedures in the delivery of palliative care. Bothpractices were large postgraduate training practices,which had access to a large extended PHCT 'on site'and were committed to providing high quality generalmedical services. They were of similar size with 13000patients of whom 15% were over 65 years and 8% over 75years. However, one served an ethnically diverse, deprivedinner city population, and the other a semi-rural popula-tion of ex-mining and old agricultural communities witha very small black and minority ethnic population.

These practices were chosen for two reasons: first, thedemands of patient recruitment, data collection and theirparticipation as research subjects made commitment tothe research essential; secondly, because we proposed toinvestigate the differences and challenges in providingpalliative care to patients dying from malignant and end-stage cardiorespiratory disease it was important to exam-ine 'good practice'. If we had studied 'standard practice',then we would have been likely to describe deficits in care

provision to both groups rather than increasing our

understanding of the particular problems of providingcare to people with end-stage cardiorespiratory disease.

Participants: patients and carers

Inclusion criteria were: any patients identified by theirgeneral practitioner (GP) as being in receipt of palliativecare, aged 18 years or over with terminal cancer, chronicrespiratory failure or cardiac disease (end-stage cardior-espiratory disease).

Recruitment

Once potential patients had been identified they were

sent an information pack about the study with a personal

covering letter from their GP. The pack contained a letterfrom the research team outlining the project's aims andinviting the person and/or their carer to participate. Italso contained a reply sheet to indicate that the personwanted to take part in the study, together with a replypaid envelope. Although the practices knew who hadbeen approached to take part in the study, they were notaware of who volunteered to take part. To ensureconfidentiality was not breached at any point, the teamdid not compare the number of people who had chosento take part with those who might have been approached.

Interviews and focus groupsQualitative semi-structured interviews were used toexplore the experiences of people who were dying and/or their lay carers. The interviews were conducted by twoof the authors (CE and LJ) and explored such areas as:impact of disease on everyday life; experience of receivingdiagnosis and/or prognosis; experiences of care and gapsin service provision. The interviews were designed toallow exploration of potential differences between cancerpatients and those with end-stage cardiorespiratorydisease. Fifty interviews, relating to 29 patients, wereconducted in total (18 male, 11 female); 4 people did notidentify anyone as their carer. Each patient and/or laycarer was interviewed at least once prior to death, andwhere possible follow-up interviews were conducted atapproximately four-month intervals (only one follow-upinterview was possible with a cancer patient). Two peopledied before an interview could take place, and thereforeonly bereavement interviews are available with theircarers. The majority were joint interviews with the patientand their lay carer, usually their spouse. Interviews weredesigned to be free flowing to allow patients and theircarers to describe their experiences and to express theirviews with minimal prompting. Interviews with bereavedcarers were designed to obtain a better insight intopalliative care in the final stage of life and how thepractices dealt with patients and carers at this time.Table 1 indicates the number of people interviewed bydisease condition.

Table I Patients and carers (and bereaved carers) inter-viewed disease condition

Cancer Cardiorespiratory

Patients Bereaved Patients Bereaved(follow up) carers* (follow up)** carers

Total 11 (2) 5 16(16) 2

*Two bereavement interviews were conducted withouthaving interviewed the patient.**Five patient/carer pairs (end-stage cardiorespiratorydisease) received more than one follow-up interview.

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The views and experiences of primary health careprofessionals (GPs, district nurses (DNs), specialistpalliative care community nurses and occupationaltherapists) who were involved in delivering palliativecare in the community were collected primarily throughfocus groups. All recorded interviews and focus groupswere transcribed verbatim and anonymized (one patientdeclined to have their interview taped).

AnalysisThe analysis of the interviews was an iterative processconducted by all the authors. A sub-section of transcriptswere analysed for emergent common themes, and aprovisional coding frame drawn up by one member ofthe team (CE). This coding frame was then checked forits validity by the rest of the team, by double-coding andchecking transcripts, leading to the further refinement ofthe coding frame. This coding frame was then applied toall the interviews using QSR NUD*IST 5 under the mainthemes identified.15 All the data were printed off andgrouped under four main themes, which were thenbroken down into further sub-themes. During thisprocess of analysis a number of aspects of the patients'experiences were identified, where a more systematicsearch for information across all themes was required.Text searches in NUD*IST 5 were used to facilitate this.

Results

Four themes were identified: the management andprogression of disease conditions, communication andinformation, health care in the community and awarenessof dying.

The management and progression of disease conditionsAt both practices people who were dying could beadmitted to a number of hospitals. Sometimes thedecision about which hospital to use was based on thechoice of the patient, but more often on location and easeof access. The care of many respondents with end-stagecardiorespiratory disease seemed to be managed by thehospital specialists, usually in response to a crisisnecessitating admission, rather than being co-ordinatedand managed primarily by their GP. This seemed also tobe the case for cancer patients at one of the practiceswhere the GPs felt that the increased role of the hospital-based specialist cancer services following the NationalService Frameworkb for cancer meant that they were'being sidelined a little bit ... because we are not getting ahandle on the patients as we used to' (GP63).b National Service Frameworks in the UK are designed to raisethe quality of care provided by setting standards and identifyingkey interventions for a particular service or patient group.

In the interviews, people with cancer (and their laycarers) generally presented a clear and cogent account ofthe start of their illness. They could locate it to a specificperiod of time, had (generally) been given informationabout their condition and treatment throughout andcould recount what treatments they had undergone.Although it may have taken some time and numeroustests to establish their diagnosis, ultimately they weregiven a clear diagnosis, which they understood. Theprogression of their disease, particularly in its latterstages, was usually clearly recounted with identifiable'events' (medical treatments and physical impacts).The accounts of people (and their lay carers) with end-

stage cardiorespiratory disease were generally morecomplicated than those of people with cancer, did notprovide the same clarity about disease progression, andwere often longer and more difficult to follow in anytemporal linear way. Disease progression was often agradual process complicated by comorbidity and spreadover a much longer period of time (years rather thanmonths). They frequently spoke at length about otherdebilitating conditions and of the many different peopleand sites involved in their care-hospitals, consultants andnurses; general practitioners and other community-basedstatutory staff. However, they did not always have a clearunderstanding of the care they were receiving: 'I justknow I've got a very bad chest and can't breathe' (5FN2).As they were not fully aware of their diagnosis, they werealmost certainly unlikely to know how serious theircondition was.

People with end-stage cardiorespiratory disease hadmore episodic care than those with cancer, reporting anumber of admissions over a period of years, sometimesdealing with a range of different symptoms and condi-tions. Although people with cancer also went in and outof hospitals for symptom management, this was over ashorter time span. People with end-stage cardiorespira-tory disease often referred to the fact that living withmultiple problems had a deleterious effect on theirquality of life and well-being, with many seeming to bequite 'low' as a result of living with such complex andnumerous problems. Sometimes they appeared not tounderstand fully the seriousness of their condition:'Everything was just fine, so providing that I just stayas I am everything will be fine' (13FNI). They alsosometimes seemed to 'marginalize' their condition, to theextent they spoke more about other symptoms, orconditions caused by other comorbidities, for examplearthritis and diabetes, which had a more discerniblysignificant impact on their lives in terms of what theywere or were not able not to do.

Communication and informationRespondents frequently referred to communication withdoctors, giving this similar significance as the physical

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Palliative care in the community 79

treatment of their condition. People with cancer gainedmore information from their GP, with the majorityreferring to the fact that they had been given a cleardiagnosis and information about their treatment fromthem. People with end-stage cardiorespiratory diseasewere unlikely to report such clarity:

I don't think doctors explain to you. Whether theydon't know themselves and were not sure, or what.That's a failing they've got, they don't explain more topatients. (16MN1)

They were also more likely than people with cancer to saythat they had been told by their GPs that 'there isnothing more we can do for you' and this appears to havereinforced their reluctance to 'bother the doctor'. Thiswas expressed most clearly by one patient:

... I don't go no more, even if I'm in agony. I won't goto see doctors no more because every time I go downthere they say there were nothing more I could do foryou. (3MN1)

With regard to communication with hospital staff, it wasclear that people with cancer received much more, andapparently clearer, information regarding their diagnosis,prognosis and treatments from hospital staff (usuallydoctors) than those with end-stage cardiorespiratorydisease: 'I think they leave you in the dark' (2FN1).People with end-stage cardiorespiratory disease seemedto be more unsure about what was going on with theirtreatment, its relationship to their other conditions, orindeed what they were being treated for. One factor heremay be that they were more likely to have had a numberof specialists involved with their care, sometimes atdifferent hospitals.

In terms of communication between primary andsecondary care, the liaison between hospitals and GPsdoes not appear to be fundamentally different for canceror end-stage cardiorespiratory disease patients, with bothproviding examples of good and effective communicationand information exchange, as well as failures andweaknesses in this area. The main weakness identifiedwas failure to inform GPs about hospital decisionsregarding treatment regimes. For example, one personwas given strong antibiotics in hospital but, afterdischarge, their GP was unaware of this and prescribedat a lower strength. The most dramatic case was when apatient's drugs were cancelled by the hospital, with theresult that on return home the patient had poorlymanaged symptoms and was uncertain about what drugsthey should be taking. Another area of poor commu-nication concerned hospital treatments or interventionsthat conflicted with the GPs advice, in one case leading toa break down of trust with the hospital consultant. Therewere particular problems for a person with cancer on adrug trial because neither the GP nor the hospital could

change treatments 'without the consent of the other'(8BMC1).

Health care in the communityRespondents were generally positive in the way theyspoke about their relationships with their practice. Themany positive comments included: 'extremely caring'(1lFC1), 'absolutely brilliant' (6FCB), 'I do think wewere very lucky down there' (14MN1), and 'we hadalways had very good GPs' (2FN1). Complaints con-cerned the difficulty of making a quick appointment withthe GP of choice, and the difficulty of accessing onepractice by telephone. Although it was reported that itwas difficult to make a timely appointment with a namedGP, at both practices quick access to a 'generic' GP wasnot a problem and patients were willing to wait for anappointment in order to see their own GP.

Contact with GPs. No significant differences wereapparent in the ways that the GPs related to theirpatients in face-to-face interactions. Many patientsreported they had their 'own' GP, and that they had agood personal relationship with this GP. In bothpractices the personal things that patients and theircarers commented upon positively were the good inter-personal skills of the GP, a friendly doctor-patientrelationship in which the patient was treated with respectand 'as a person' and GPs spending time with the patient.

. . . he sat for an hour with me and just talked about itall and showed just a genuine interest in our awfulplight of the situation really, which I found so - well -

I was amazed ... (1MC 1)

The fact that some people with end-stage cardiorespira-tory disease perceived there was little their GP could dofor them, seemed to deter them from asking for help fromtheir GP. This is encapsulated by the comments of thefollowing patient, who had a number of distressingsymptoms from a range of conditions, in two consecutiveinterviews:

... they're as good as gold, but they say they'reoverworked, so we don't bother them unless we reallyreally had to. (3MN1)

The fact that you go down there and say 'I don't feelvery well' - I know they can't make you better on thespot - but they say 'Well, there were nothing I coulddo. I've given you all the drugs' and you think why amI going to waste my time coming down there, butsometimes you feel that bloody ill. (3MN2)

In both practices GPs were reported to make home visits,and 'emergency calls' were reported to be responded topromptly: 'we just rang for a doctor to call and he cameout' (5FN1). This was highly valued. Nearly all patientsreceived at least one home visit during the study period,

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some of which were unsolicited by the patient. Bothpractices used an out-of-hours service (provided by thesame organization), and difficulties with this werereported by some patients. In the focus groups at eachpractice the GPs identified the out-of-hours service as 'agap in the system that isn't robust' (GP2). During thestudy period one practice put into place procedures toprovide information about their palliative patients for theon-call doctors with regard to drugs and potentialactions, instructions not to admit patients to hospitalwho did not want this, and their contact telephonenumber for emergency use. These procedures appear tohave been effective.

Contact with district nursesThe GPs and DNs at both practices reported that theyworked well together as a team in delivering palliativecare to patients, and our observations at the practicesconfirmed this. However, references to DNs were notice-ably absent from the interviews with patients and theircarers. This cannot be simply explained as an artefact ofan interviewing style that does not ask direct questions,because in a number of the follow-up interviews respon-dents were directly asked about the involvement of DNsin their care.

People with cancer were much more likely to receivecare from a DN than those with end-stage cardiorespira-tory disease. In their focus groups the nurses reportedthat they rarely looked after people who were dying withend-stage cardiorespiratory disease. This may be becauseDNs were seen as only being needed for the practicaltasks of symptom management such as dressing legulcers, pressure sores and wounds, taking blood andgiving injections. The nurses thought that the lessdramatic and rapid progression of chronic heart failureand respiratory disease seemed to mean that they weremore likely to be called in only at a 'crisis point', ratherthan providing care throughout. Further, they alsoexpressed the view that there seemed to be a reluctancein people with end-stage cardiorespiratory disease to'bother' these nurses (or, as previously noted, their GPs).The nurses commented that while people with cancer andtheir families felt it was acceptable to ask for help, andknew the type and sources of help available to them,patients and families that had been coping with chronicillnesses were reluctant to seek help as 'then they feel likethey've been a failure because they can't manage' (DN4).This made it difficult for the nurses to provide palliative/supportive care or relieving equipment for them at asufficiently early stage. The nurses also noted that it wasmuch harder to get access to other services for thesepatients than it was for cancer patients, as cancer wasprioritized: 'more services, more equipment, moremoney' (DN 1).

Other sources of support in the communityOther sources of help in the community were identifiedby some patients and their carers, although these wererarely elaborated upon in any detail. A number of peoplewere unclear about how social services could be accessed,and some communication problems between communityand hospital social services were noted. Financial sup-port was mentioned as an issue mainly for patients withend-stage cardiorespiratory disease. People did notalways know that they were entitled to benefits such asattendance and disability living allowances,' nor whothey should contact to access the allowances they wereentitled to. It was not possible to determine whether onegroup of patients had more difficulty in getting atten-dance allowance or other benefits than the other. In thefocus groups the nurses suggested that people with end-stage cardiorespiratory diseases were unlikely to receiveadditional financial support as their condition progres-sively worsened:

... because it's often a slowly deteriorating disease -

they have already started on benefits - it is when thelevel changes to get a higher (level of benefit) and theydon't often know that. Nobody prompts them thatthey could be entitled to more ... (DN1)

In the focus groups the doctors and nurses said that itwas easier to get palliative care services for their cancerpatients than for those with end-stage cardiorespiratorydisease. As one GP summarized, for cancer there wereestablished and well known packages of care involving 'alot of agencies' that GPs could draw upon. However, thisdid not exist for patients with end-stage cardiorespiratorydisease so GPs and patients were 'left to their own devices... to get on with things as much as they can'. GPsprovided less help to these patients because 'we don'tknow how. We have not been trained as well in how tomanage it' (GP4). The consensus from the focus groupswas that it was hard to get respite care for people withend-stage cardiorespiratory disease.

Awareness of dyingIn the focus groups at each practice the GPs agreed thatit was much harder to come to the decision that a personwas dying if they had a nonmalignant condition:

One of the difficulties is that we are all bad at decidingwhen somebody is going to die. It is bad enough withcancer ... we are not so good at actually sort of saying'This is a palliative treatment of the heart' - there isnothing in the heart that is actually killing you and wekind of drift on with the disease even though in theory

c These benefits in the UK are designed to ameliorate some ofeconomic hardship often caused by disability or life-limitingillness.

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Palliative care in the community 81

the patient may be getting a very similar type oftreatment. (GP2)

The clear implication, as in this extract, was that GPswere thus much less likely to communicate to thesepeople that they were in the final stage of their disease.From our interviews it seemed that most of the cancer

patients were definitely or very probably aware that theywere dying, although they and their carers were at timescritical of what they perceived as the harsh manner inwhich they had been given this information. A muchsmaller proportion of people with end-stage cardiore-spiratory disease were definitely or very probably aware

that they were dying, for example:

I've got this death certificate signed. I mean I'm no

stupid chap. I know it's the end of the trail. Now then,and it's only a matter of how long shall you be here.It's only a matter of six months, twelve months, ninemonths, six years. It's only a matter of how long.(1OMN1)

Another person with end-stage cardiorespiratory diseasewas reported by their lay carer to be aware that theywere dying, but the patient did not express this explicitlywhen interviewed. However, in the main it was difficultto make any judgement about the awareness or prog-

nosis of patients with end-stage cardiorespiratory dis-ease. The people living with end-stage cardiorespiratorydisease who knew, or appeared to know, that they were

dying did not seem to have been given clear informationby their doctors and seemed instead to rely upon layunderstandings and interpretations to make sense oftheir symptoms: 'old age [is] creeping on faster'(17MN1). They did not articulate their knowledge oftheir terminal prognosis in as overt a way as those withcancer and were unclear about the likely timing of theirdeath.

Discussion

Summary of main findingsThis study explored the views of health professionals,patients and their carers of the delivery of palliative care

by PHCTs to people living with either terminal cancer or

end-stage cardiorespiratory disease. The research showsthat, even in PHCTs committed to the delivery ofpalliative care, people dying with end-stage cardiore-spiratory disease are less likely than those with cancer toreceive full, and easily understood, information, to beaware that they are dying or to receive district nursing

care.

Strengths and limitations of the studyThis was a small scale qualitative study conducted in twogeneral practices in the East Midlands, England. It was

designed to explore the differing experiences of peopledying with cancer with those dying of end-stage cardior-espiratory disease; we do not make any claims to itsgeneralizability. We believe that by conducting thisresearch in practices committed to providing palliativecare to their terminally ill cancer patients we can contrastmuch better the care of people dying with end-stagecardiorespiratory disease. However, it should be notedthat both practices initially had difflculties identifyingpatients with end-stage cardiorespiratory disease as beingin receipt of palliative care. Further, we would suggestthat if prospective interviews are used it may be useful tohave longer gaps between interviews for people withcardiorespiratory disease to allow for more possiblechange to occur. More research is needed to elucidatethese findings further.

Implications for clinicians and policymakersOur research shows that, even in two practices com-mitted to the delivery of high quality palliative care,people dying with end-stage cardiorespiratory diseaseremain the 'disadvantaged dying'. They are less likelythan people dying with cancer to receive full, andclearly understood, information about their illness orits likely progression; to be aware that they are dying; orto receive district nursing care. They are also more likelyto experience financial difficulties, because they are lesslikely to receive, or know about, attendance allowance.The relative disadvantage of patients dying from end-stage cardiorespiratory disease as compared to thosedying from cancer in our study is very similar to thatfound elsewhere.16'17

This study found clear differences in the levels ofunderstanding of their disease between people withcancer and those with end-stage cardiorespiratory dis-ease. Some of the differences in understanding seem tobe directly related to the information they received fromhospital staff and GPs about their conditions. Peopledying with cancer (and their carers) were much morelikely to have had the terminal nature of their diseasecommunicated to them by health professionals. Thosewith end-stage cardiorespiratory disease who expressedawareness of their dying status tended to surmise this onthe basis of their own lay knowledge, rather than tohave been given a terminal prognosis in an explicit way.If patients do not have a clear understanding abouttheir illness, they are unlikely to talk to their carersabout their dying, or make the same preparations thatsome cancer patients may. If they are unaware of theirprognosis, this may disadvantage their access to end-of-life care. These findings support those of Horne andPayne, who note that people dying with heart failureoften have unmet need in terms of both care, supportand in the information they received about theircondition.17 Like the people in our study, Horne and

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82 C Exley et al.

Payne's respondents also referred to health professionalstelling patients that they could not do 'anything more'for them.Another contributory factor seems to be the lay

interpretations of diagnoses. It remains the case that adiagnosis of 'cancer' is commonly associated withextensive and/or lengthy and often uncomfortable treat-ments and ultimately death. This may facilitate discus-sions between patients and professionals, as patientsalready share underlying assumptions. Such culturalassumptions also provide a shared 'language' betweenpatients and professionals. From a clinical perspective,most cancers are more predictable in terms of theirtrajectory, which may also serve to make healthprofessionals feel more confident in their interactionswith patients. End-stage cardiorespiratory disease, how-ever, is less easy to predict, and commonly oscillatesbetween 'peaks and troughs', with gradual decline offunction, but with continuing therapeutic benefits fromtreatment.One important message is that people dying with end-

stage cardiorespiratory disease seem reluctant to 'bother'their GP because they 'know' there's 'nothing more' thatcan be done. Thus they are less likely to bring symptomsthat could be alleviated to the attention of their GP. Suchreluctance to consult may be a product of the difficulty ofcommunicating information about the disease and itslikely progression and insufficient understanding amongpatients and their lay carers of certain symptoms andcomorbidity.

Conclusions

There is an increasing call for palliative care to beextended to all. Research is needed to evaluate whetherexisting palliative care packages are either appropriate orof value to people dying with end-stage cardiorespiratorydisease and whether new packages of care can bedeveloped that are tailored to specific long-term ad-vanced conditions such as chronic heart failure andchronic respiratory failure. There are clear pathways ofcare for people with cancer; this is not the case for thosedying with end-stage cardiorespiratory disease.16 Thedevelopment of appropriate packages of care, and theability to access other services, would mean that clin-icians were able to offer such patients better end of life.Their existence might also stimulate greater thoughtabout initiating such care. In the short term, primaryhealth care professionals may want to consider ways inwhich telling patients there is nothing more they cando for them does not lead to patients feeling theyare 'bothering' the doctor and therefore should notconsult.

AcknowledgementsThe research on which this paper is based was funded byTrent NHS Research and Development. We would like tothank the staff and patients at both practices involved inthis research, in particular Alison McEvoy and JayneHill. We are grateful to Professor Julia Addington-Hallfor her helpful comments on an earlier draft of this paper,and to the two anonymous Palliative Medicine reviewersfor their suggestions.

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