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Social Science & Medicine 60 (2005) 2597–2607

www.elsevier.com/locate/socscimed

The place of death of cancer patients: can qualitative data addto known factors?

Carol Thomas�

Institute for Health Research, Lancaster University, Alexander Square, Lancaster LA1 4YL, UK

Available online 22 December 2004

Abstract

Research on the distribution of cancer deaths by setting—hospital, hospice, home, other—is longstanding, but has

been given fresh impetus in the UK by policy commitments to increase the proportion of deaths occurring in patients’

homes. Studies of factors associated with the location of cancer deaths fall into two main categories: geo-

epidemiological interrogations of routinely collected death registration data, and prospective and retrospective cohort

studies of terminally ill cancer patients. This paper summarises the findings of these studies and considers the place of

death factors that are generated in semi-structured interviews with 15 palliative care service providers working in the

Morecambe Bay area of north-west England. These qualitative data are found not only to confirm and considerably

enrich understanding of known factors, but also to bring new factors into view. New factors can be grouped under the

headings: service infrastructure, patient and carer attitudes, and cultures of practice. Such an approach provides useful

information for policy makers and practitioners in palliative care.

r 2004 Elsevier Ltd. All rights reserved.

Keywords: Place of death; Cancer; Palliative care; UK

Introduction

In the UK, the National Health Service (NHS) Cancer

Plan (Department of Health (DoH), 2000) brought a

new impetus to academic research on the place of death

of cancer patients. While research on the distribution of

cancer deaths by setting—hospital, hospice, home,

other—is longstanding, the policy directives and extra

investment currently percolating through cancer and

palliative care services has given it greater relevance

(DoH, 2001). There is a policy commitment to increase

the proportion of deaths occurring in home settings,

presently standing at just under a quarter of all cancer

deaths (Ellershaw & Ward, 2003). This is deemed

important because evidence suggests that over 50% of

e front matter r 2004 Elsevier Ltd. All rights reserve

cscimed.2004.10.020

524 594092; fax: +44 01524 592401.

ess: C.Thomas@lancaster.ac.uk (C. Thomas).

cancer patients would prefer to die at home (Higginson

& Sen–Gupta, 2000). These developments occur in the

context of a long-term secular trend away from home

death in the UK (Clark & Seymour, 1999).

Research on the ‘actual place of death’ of cancer

patients has sought to identify the factors associated

with, and predictive of, its location, with predictors of

home deaths a particular focus. Much literature on this

topic is quantitative in character and this paper

considers what qualitative data might add. It suggests

that qualitative data can enrich our understanding, by

confirming known factors and by bringing into view an

additional set of factors associated with place of death.

This holds a promise of the enrichment of the policy and

practice evidence base in palliative care.

The type of qualitative data brought to bear in this

discussion is new to place of death research because it

analyses palliative care professionals’ reflections on their

d.

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–26072598

work in general. The findings reported here were

generated as one element in a two-year (2000–2002)

longitudinal observational study, funded by the NHS,

on the place of death of cancer patients in the

Morecambe Bay (MB) area—a former Health Authority

(HA) district in north-west England. The data were

generated in semi-structured interviews with 15 indivi-

duals involved in palliative care services in the MB area

(referred to as ‘interviews with professionals’ for

brevity). All had a close understanding of palliative

care services in their locality, and 13 possessed extensive

experience of working directly with terminally ill cancer

patients and their informal carers. While the sample is

small and confined to a single geographical area, the

interviews produced a rich and internally consistent

account of the factors that influence place of death.

The literature on actual place of death among cancer

patients

In the UK and USA, interest in predictors of place of

death has grown in the context of long-term trends away

from home towards institutionally located deaths.

Between 1967 and 1987, the proportion of cancer deaths

in hospitals in England increased from 45% to 50%, and

from 5% to 18% in hospices and other institutions

(Cartwright, 1991). The increase in hospice deaths is

testimony to the rapid expansion and diversification of

hospice services in the UK in the years following the

opening of the landmark St. Christopher’s Hospice in

1967. In 2000, the proportion of cancer deaths in

hospital in the UK stood at 55.5%, with 23% at home,

16.5% in hospice, and 5% in other settings, principally

nursing and residential homes (Ellershaw & Ward,

2003). Within the UK, variations in place of death are

found between and within regions. For example, in

North West England (1990–1994), the proportion of

deaths occurring at home ranged from 33% in South

Lancashire to 22% in Morecambe Bay (Hospice

Information Service data, in Higginson, 1999).

Studies of factors associated with the place of cancer

deaths fall into two main categories. The first consists of

epidemiological interrogations of routinely collected

death registration data to identify spatial patterns and

trends at national, regional and local scales (Clifford,

Jolley, & Giles, 1991; Hunt, Bonnett, & Roder, 1993;

Sims, Radford, Doran, & Page, 1997; Grande, Adding-

ton-Hall, & Todd, 1998; Higginson, Astin, & Dolan,

1998; Higginson, Jarman, Astin, & Dolan, 1999; Duffy,

Irvine, & Shaw, 2002; Bruera, Sweeny, Russell, Willey,

& Palmer, 2003; Gatrell et al., 2003). The second

category comprises prospective and retrospective cohort

studies of terminally ill cancer patients involving, in

varying combinations, the analysis of individual-level

data gathered from patients, their informal carers, their

formal health care providers, and case records (Dunlop,

Davies, & Hockley, 1989; Townsend et al., 1990;

Hinton, 1994a, b; Brazil, Bedard, & Willison, 2002).

Both types of study have brought to light a wide range

of place of death predictors. Epidemiological studies by

Sims et al. (1997) and Higginson et al. (1999) have

established the existence of marked socio-economic

variations in place of death, with patients in socio-

economically disadvantaged circumstances being more

likely to die in hospital rather than in hospice or at

home. Other factors identified in this type of study are

tumour type, gender, age, and distance from services.

Tumour type is a key determinant, with deaths from

lymphatic, breast and haematological cancers being

much more likely to occur in hospital than deaths from

other cancers (Higginson et al., 1998; Gatrell et al.,

2003). Deaths at home are most often associated with

gastrointestinal, genitourinary, and respiratory cancers

(Hunt et al., 1993; Grande et al., 1998). Men are more

likely than women to die at home, and older adults are

less likely than their younger counterparts to die at

home or in hospice (Hunt et al., 1993; Grande et al.,

1998; Higginson et al., 1998; Gatrell et al., 2003). At an

individual level, Gatrell et al. (2003) measured proximity

to hospices and hospitals and found this to be a

significant influence on place of death: proximity to a

hospice increases the probability that a cancer patient

will die there, and the same is true of hospitals (see also

Herd, 1990).

Studies utilising prospective and retrospective cohort

designs have confirmed these findings and drawn

attention to the importance of other factors in predicting

the place of death of cancer patients. The relevance of

the presence and characteristics of informal carers has

come to the fore in this research, something that cannot

be identified in most routine mortality data sets.

In a prospective study of 160 patients referred to a

hospice support team, Dunlop et al. (1989) identified the

carer’s inability to cope at home, usually in the face of

deterioration in the patient’s condition, to be a key

factor leading to a hospital admission followed by a

death in that setting (see also Brown & Colton, 2001).

Hinton’s prospective study confirmed this (Hinton,

1994a, b) and pointed to other, often inter-related,

factors precipitating admission to either hospice or

hospital care: the need for specialist symptom control;

further serious deterioration, typically involving severe

pain; a request for admission by a patient, relative or

GP; and the patient’s emotional distress or confusion. In

a retrospective cohort study, Brazil et al. (2002) found

the odds of dying at home were lower when patients had

caregivers whose own health was reported as being only

fair to poor, and among patients who used hospital

palliative care beds.

Some of the factors reported above are related to the

nature of service infrastructures in a patient’s area of

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–2607 2599

residence, especially the availability of specialist in-patient

and community based palliative care services. In their

comprehensive review of the literature, Grande et al.

(1998) concluded that ‘Patients with certain character-

istics may therefore be more likely to die at home by

virtue of being more likely to access services which

improve their chances of dying at home’ (Grande et al.,

1998, p. 573). Higginson and Priest (1996) reported that

home deaths were more likely when community palliative

care nurses and Marie Curie nurses (offering care during

the night) are involved in care arrangements. The

involvement of a committed GP, confident in the support

of dying patients, increases the chances of a home death

(Thorpe, 1993; Brazil et al., 2002). Symptom severity and

the availability of specialist equipment for use in home

settings is found to be predictive of place of death;

however, the use of social and health services for social

care was associated with a decreased likelihood of home

death (Karlsen & Addington-Hall, 1998). The availability

of specialist palliative care hospital beds in an area of

residence predicted place of death, with higher levels

associated with an increased proportion of hospital

deaths (Pritchard et al., 1998). Such findings resonate

with those reported above concerning distance to services.

Studies that track patients through the final months of

life have found that the strength and visibility (to

professionals) of a patient’s desire to die at home is

associated with the actual location of death (Karlsen &

Addington-Hall, 1998; Cantwell et al., 2000; Brazil et al.,

2002). An ‘open awareness’ of dying, where patients and

carers both acknowledge death and can discuss place of

death options, increases the chance of dying at home or in

hospice (Seale, Addington-Hall, & McCarthy, 1997).

Other factors that have been found to influence the

location of cancer deaths include the length of survival

time from diagnosis (Hunt & McCaul, 1996; Dunlop et

al., 1989), marital status, and rural residency (Moinpour

& Polissar, 1989).

1It should be noted that in the study area, and thus in this

paper, the term ‘hospice’ refers to a physical building in which

people are cared for and may die, rather than a philosophy of

care that can be delivered in the home and other settings. The

area has two hospices of contrasting sizes—one with 8 beds

(west), the other with 22 (south-east). Professionals in the

western part of the district felt at a considerable disadvantage in

this respect.

Methods

To describe the nature and development of specialist

palliative care services in the study area, and thus to

disclose the place of death options currently available,

semi-structured interviews were conducted with a

purposive sample of 14 professionals closely associated

with palliative care services and one hospice voluntary

worker. Other elements in the study, reported elsewhere,

involved: (i) an interview series with terminally ill cancer

patients (n ¼ 41) and their informal carers (n ¼ 18), and

(ii) the statistical analysis of 6900 cancer deaths in the

study area in an eight year period (1993–2000) (Thomas,

Morris & Gatrell, 2003; Gatrell et al., 2003; Thomas,

Morris, & Clark, 2004). The study received full approval

from relevant NHS research ethics committees.

The study setting and service context

The profile of the location of cancer deaths in the study

area is at variance with UK averages as a result of the

raised level of provision of hospice beds in area (30 beds

in the study period)—though this is skewed in favour of

the south-eastern part of the district. There are no

specialist palliative care beds in the hospital sector. Of

6900 cancer deaths in the study area between 1993 and

2000, 33% occurred in hospice1 and 35% in hospital,

compared to 16.5% and 55.5%, respectively, in the UK,

(Gatrell et al., 2003; Ellershaw & Ward, 2003). The

proportion of deaths at home was 22%, very close to the

23% UK average, with 10% in other settings, principally

nursing and residential homes (5% in the UK). Together,

these figures suggest that the availability of hospice beds

in the area serves to re-direct deaths from hospital to

hospice rather than from home to hospice.

Of course, variability in the configuration of specialist

palliative care services is a general phenomenon in the

UK, bound up with the vicissitudes of voluntary sector

and statutory funding in recent decades (Higginson, 1999;

Clark & Seymour, 1999). Average figures for place of

cancer deaths in the UK must therefore be interpreted

with caution. Nevertheless, the particular service context

in the study area must be borne in mind when considering

the professionals’ accounts of the factors observed to

influence the place of death of cancer patients.

Sample characteristics

Individuals approached for interview were experi-

enced practitioners identified through reputational

sampling techniques. In constructing a purposive sample

it was important to obtain accounts from practitioners

in all of the relevant settings—community, hospice and

hospital, and to ensure that all of the key localities in the

area were represented. Nineteen potential interviewees

were contacted; the four that refused did so because of

heavy workloads.

The 15 interviewees were closely associated with

specialist palliative care provision in the area: 11 health

care professionals, one social care professional, one

hospice manager, one former Health Authority (HA)

manager with a palliative service remit; and one

voluntary hospice worker. Six were male, nine female;

13 of the 15 had direct and frequent contact with

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–26072600

patients and carers, and will be referred to as ‘front-line

professionals’. With two exceptions, all were employed

in the study area at the time of interview. The exceptions

were the former HA manager who had recently become

an NHS Primary Care Trust manager in a neighbouring

district, and a retired nursing team leader who had

specialised in palliative care for many years in the

locality.

In addition to participating in project interviews, nine

interviewees were invited to participate in a linked

interview for a separate project (on the same interview

occasion)—the Hospice History Project (http://www.hos-

pice-history.org.uk/). Valuable data on place of death

was also produced in these HHP interviews, and are

drawn upon here. The project interviews averaged 30min

in length; the HPP interviews averaged 42min.

The project interviews were semi-structured, designed

to gather data on: the nature of the professional’s work

and the service provided; perspectives on the factors

influencing the place of death and the preferences of

patients and carers; and the interviewee’s ideal config-

uration of services. The professionals were not prompted

to comment on the salience of particular factors

associated with place of death derived from the literature,

since our interest lay in their spontaneous accounts. The

HHP interviews captured the interviewees’ contributions

to hospice and palliative care services, and their personal

involvement in service developments.

Data analysis

Interview data analysis involved a constant compara-

tive method (Glaser & Strauss, 1967). Key themes to

emerge were: role descriptions; service structures and

developments, including perceived gaps in services;

factors observed to shape place of death outcomes; the

nature of, and reasons for place of death preferences

held by patients and carers; reasons for the frequent

mismatch between patients’ preferences and actual place

of death outcomes; and ideal place of death arrange-

ments. With regard to the factors observed to shape

place of death outcomes, a high degree of internal

consistency in the data was found, following careful

checking for deviant cases. Another validity check

involved the presentation to three interviewees of a

lengthy draft findings chapter, to appear in the project

report (Thomas, Morris, & Gatrell, 2003).

Findings: factors arising from palliative care

professionals’ perspectives on actual place of death among

cancer patients

The professionals interviewed volunteered all of the

factors associated with place of death identified in the

research literature reviewed above. However, the experi-

ential knowledge they possessed meant that their

accounts went beyond being merely confirmatory. Their

narratives added depth and novel dimensions to known

factors and brought entirely new factors to light. Table 1

summarises the factor groupings found both in the

literature and in this study, and indicates the direction-

ality of these factors in predicting a home death. New

factors, or new dimensions of known factors, are

distinguished by their presentation in italics in Table 1.

Service infrastructure factors

The professionals had a great deal to say about how

service infrastructure factors determined where cancer

patients die. In fact, our interviewees perceived the size,

remit, funding and mode of operation of a variety of

services in the locality, together with the policy context

and skill-mix within service sectors, to make up the most

significant set of determinants of place of death. This

suggests that these factors may carry considerably more

weight as predictors of place of death than is evident in

the literature. While presented below as analytically

distinct, these service infrastructure factors are in reality

closely inter-related.

Service infrastructure: funding, budgets and priority

setting

As established practitioners in the area, the inter-

viewees had witnessed the changing fortunes over time

in levels of funding of hospital, hospice and community

services. From their point of view, place of death

options and outcomes were dictated in fundamental

ways by factors associated with NHS and Social Service

funding, budgets and priority setting, as well as by the

vagaries of charitable funding for the hospices and

voluntary sector support organisations. The Medical

Director of the smaller hospice in the locality reported

that 85% of that institution’s funding currently came

from charitable sources, a finite and not entirely reliable

source.

Professionals made frequent reference to the limits set

to place of death options by the number of hospice beds

in the area (there being no palliative care beds in the

hospital sector), especially the relatively small number of

such beds in the western part of the district. Since these

specialist palliative care beds were almost always fully

occupied, deaths, it was asserted, often occurred in other

settings:

Specialist Palliative Care Nurse (SPCN, 2): If the

patient had to die in hospital (rather than hospice)

the relatives are often very grateful for what we’ve

done in the past, and they realise that there’s nothing

we can do about that—we can’t throw somebody out

of bed (in the hospice). It’s all down to money and

ARTICLE IN PRESS

Table 1

Key factors associated with the place of death of cancer patients, and how these predict a home death

Group headings for key factors associated with place of death

(not in order of importance)

Predicts a death at home

Service infrastructure factors – A relatively small number of specialist palliative care beds

(hospice, hospital) in a locality.

Health and social service provision (specialist palliative care

beds in hospital and hospice; specialist and non-specialist

palliative care staff in primary care and social services)

– A relatively high number of specialist palliative care

professionals in community settings (e.g. nurses, doctors,

social workers).

– Supportive input from non-specialist professionals in

community contexts, especially GPs.

Service funding, budgets and priority setting – High levels of financial investment in care in home settings.

Micro-politics in play in the locality – Cross-agency/sector, organisational and inter-professional

agreement to invest in and support home deaths.

National cancer and palliative care policies – Policy directives in favour of increasing the proportion of home

deaths.

Existence of multidisciplinary palliative care teams – All of the required skill-types are available to support patients

and carers in home settings.

Informal carer characteristics – A carer is present, either co-resident or in close proximity.

– Absence of serious morbidity in carer; carer is female.

– High level of ability and motivation in the carer to

deliver care at home, for as long as necessary.

– High level of support for the main carer, from family, friends

and professionals.

Symptom severity and management – Symptoms are under control because equipment and drugs are

available for use in home settings.

– There is recourse to rapid assistance at home if symptoms

suddenly deteriorate and crises arise, e.g. severe pain.

and case complexity – Cancers do not present too much complexity in their medical

and nursing management.

Patient and carer attitudes

Strength of place of death preference – A strongly expressed preference to die at home.

Changes in place of death preference – A consistent preference to die at home.

Patient and carer attitude to dying – An open awareness and acceptance of dying.

Strength of patient desire not to be a burden upon the carer – Patient and carer acceptance that caring is not too burdensome.

Degree of trust invested in individual professionals – Patients and carers invest a great deal of trust in individual

professionals attending in home settings.

Cultures of practice

Quality of inter-professional relationships – Team working, especially across organisational and specialist/

non-specialist boundaries, is of high quality.

The ethics and habits of professional practice – Professionals’ ideas of best practice and of a ‘good death’ , and

their routines of professional behaviour, are facilitative of home

deaths.

Changing nature of practice within hospices (medical

specialisation and increased patient throughput)

Patient demographic and socio-economic characteristics – Younger, male, married. Higher socio-economic status, but

home deaths can be supported if extended family networks exist

among those of lower socio-economic status.

Tumour type – Gastrointestinal, genitourinary, respiratory cancers.

Distance to services – Inpatient care (hospital, hospice) is at some geographical

distance, e.g. rural residential location.

Factors identified in the place of death research literature and confirmed in interviews are shown in normal text. New factors, or new

dimensions of known factors arising from the interview data, are shown in italics.

C. Thomas / Social Science & Medicine 60 (2005) 2597–2607 2601

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–26072602

funding. We can’t just open 11 (hospice) beds

because there’s no money there.

Social Service funding priorities were reported to be at

variance with those in health and palliative care services:

Specialist social worker (employed by the Local

Authority): I just get so frustrated by the structures

and processes of Social Services, and the restric-

tionsy The policies sometimes do not fit in with

palliative care.

Service infrastructure: the micro-politics in play in the

locality

Most professionals were also acutely aware of factors

associated with what might be called the micro-politics in

play in their district, that is, the struggle for resources

and influence among and between professional groups

and their organisations. Accounts indicated clearly that

the service supply side factors determining place of death

outcomes were underpinned by factors associated with

managerial and professional status, power, and clinical

authority. For example, a senior District Nurse who had

championed a unique district nurse-led model of

palliative care for her General Practice population, with

the full support of her own Practice GPs, reported that

over a period of 12 years she had battled for its survival

against health service planners and other providers who

were opposed to this model of care. Passions had run

high:

District Nurse: I really believe that what we are doing

here should be emulated by every district nursing

practice: this should be the way ahead, the way to go,

It’s cost effective, it really is, and it enables patients

to live a much better quality of life, and they get out

and live. We’ve seen that time and time againy

To give another example, a Specialist Palliative Care

Nurse described the frustrations that she sometimes

experienced in securing what she believed to be the

conditions necessary for the care of patients in home

settings. In her view, her failure to achieve this in the

face of a GPs ‘wrong’ decision could lead to an

unwanted hospital admission and a subsequent death

in that setting. These frustrations hinged on her

professional position as a nurse, with less authority

than the medical professionals she worked alongside:

SPCN (2) yeven getting changes in medication can

be extremely difficult because then I have to go back

to the GP. I have to say ‘Mr X’s pain is not properly

controlled, and he’s got abdominal colic, or he’s got

lots of secretions, do you think he could have some

Hyacin, or can we increase his syringe, MST, or can

we commence a syringe drivery?’. I have to put my

case to a GP who may or may not agree with me.

Often they see it as a threat, though I work with a lot

of GPs who are brilliant—if you ask for something

they say ‘Right, fine, no problem, I will write the

prescription, get it, the district nurse or you can start

the syringe driver’. But some GPs will not, so patients

can miss out in as much as a doctor may not do what

you suggest, or he may have his own ideas which you

may think are contrary to best practice or the current

protocol.

Service infrastructure: national cancer and palliative care

policies

Service funding, professional practice, and thus place

of death outcomes for patients were also understood by

all to be heavily influenced by factors associated with the

national cancer and palliative care policies being

implemented by clinical authorities and Government at

any given time. At the time of interview, the impact of

the NHS Cancer Plan (DoH, 2000) was being felt, a

policy that gave a greater impetus to a long-term UK

heath-care goal of increasing the proportion of cancer

deaths in home settings. In this climate, the profes-

sionals’ minds were focused on the question of how to

boost the percentage of home deaths in their area. All of

the front-line professionals stated that this proportion

could not be raised significantly unless there was an

increased policy commitment to, and thus raised levels

of funding for, essential community services to support

both patients and carers at home, particularly in the two

to three weeks immediately preceding death. Without

such investments, adequate care-packages could not be

provided. There was unanimity that the services required

to meet shortfalls in the area included a comprehensive

24-h district nursing service, a considerably increased

Marie Curie nursing night-sitting service, increased

provision of out-of-hours palliative care expertise, and

increased social service input. To give just one example:

SCPN (3): ythere isn’t 24-h nursing care, and that

may have a bearing (on place of death), especially if

people live alone. The night-time can be very difficult

and you can’t get Marie Curie (nurses) every nighty

Almost all interviewees expressed a desire for a greater

overall service orientation toward the provision of

palliative care in community settings.

Service infrastructure: the existence of community-based

multidisciplinary palliative care teams

The professionals were also largely in agreement that

supporting a greater number of home deaths would

require increased investment in specialist staff, so that

‘real’ multi-disciplinary palliative care teams could be

established in community settings—that is, teams that

extended beyond doctor–nurse groupings. The presence

or absence of such teams in a locality therefore

becomes a place of death predictor. Community-based

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–2607 2603

multi-disciplinary palliative care teams were reported as

not yet in place:

Palliative care consultant (1): (At present the service

in the community) is all a bit ragged. And until it gets

more streamlined and we get to know patients in the

community—and we’re sending out an occupational

therapist, a physiotherapist and a social worker–then

they’re going to keep coming into the hospice or the

hospital.

In addition, attention was often drawn to the need for

the increased provision and training of non-specialist

palliative care staff in community settings if the home

death rate was to be raised—that is, of staff in primary

heath care (district nurses, GPs), in social services (social

workers, care workers), and in nursing and residential

homes.

Informal carer characteristics

The accounts of the professionals lend strong support

to the findings of prospective and retrospective cohort

studies that the location of deaths is associated with

carers’ presence, health status, caring capacity, coping

ability, and motivation:

SCPN (1): If they have a carer, (of relevance is) how

old is the carer? How fit is the carer? And what

impinges on the carer is the amount of support that

can be given. If they are up at night and not sleeping

because they’re worried, or because the patient is

poorly and needs to be cared for through the night,

the carer generally isn’t able to carry on coping

because they get worn outy Sometimes the carer

gets scared, they don’t know how the illness is going

to unfold, so the carer might become anxious. I feel

that the patient can sense that anxiety sometimes,

and the patient themselves will say, ‘I think it’s time I

went to the hospice now’. I think it’s through the

night that the carers get worn out.

Interviews with health professionals can add a

considerable amount of detail concerning the accumula-

tion of strains experienced by carers over time as

activities and demands grow and change. These pres-

sures can undermine the most ‘able’ and motivated of

carers, leading to a death in hospital or other institu-

tional setting. The degree of support received by the main

carer from family members and friends, and from health

and social carer professionals is also brought to light as

a factor. In the professionals’ experience, carers with

reliable and consistent sources of support—both prac-

tical and emotional—were more likely to cope with the

vicissitudes of terminal illness over an extended period

of time, often enabling the patient to die at home.

Symptom severity and management

The severity of symptoms, and the capacity of

community-based services and informal carers to

manage symptoms in home settings, constituted a

further set of factors reported as determinants of place

of death, confirming knowledge of known factors.

Patients with complex needs requiring specialist equip-

ment and drugs were often admitted to a hospice or

hospital, where they might die, because the service

infrastructure did not allow such patients, and especially

their symptom crises, to be managed at home. The

growth in case complexity is itemised in Table 1 as a new

place of death predictor:

Hospice Medical Director: y we are getting increas-

ing numbers of very complex problems. It then

becomes impossible to move people on (from the

hospice)—particularly younger disabled adultsy.

Cancer patients are being salvaged in a way, so that

they are living a great deal longer—long enough to

get horrendous complications.

Patient and carer attitudes: place of death preference,

attitude to dying, assessment of the care burden, and trust

in professionals

Our interviewees confirmed that the strength of the

patient and carer place of death preference was relevant.

Those with a strong preference to die in a particular

setting were more likely to achieve this than those whose

preferences were less resolute. Most also noted that it

was not uncommon for patients to change their place of

death preference as symptoms worsen and death draws

nearer, something reported in Hinton’s (1994a, b)

prospective cohort study. Typically in the study area, a

preference in favour of a hospice death would replace a

home preference, often leading to a hospice death.

The majority of front-line professionals confirmed

that the attitude of the patient and carer toward dying

played a role. That is, home and hospice deaths tended

to be associated with an open awareness and acceptance

of death, while hospital deaths might reflect denial or

non-acceptance:

Palliative care consultant (2): A lot of people will

request to come into the hospice, but some people

just can’t face it and therefore would prefer to die in

the hospital because they’re not willing to face up to

the fact that they are dying.

All front-line professionals suggested that patients

sometimes expressed a strong desire not to be a burden

upon their loved ones at home, especially upon the main

carer. A desire not to be a burden oriented patients

toward the hospice as a place of death option (see

Thomas et al., 2004).

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–26072604

A factor that works in a subtle and indirect fashion is

the degree of trust invested in individual professionals by

patients and carers. Indeed, the importance of winning

the trust of those they cared for was a strong theme in

the accounts of all of the nurses, the social worker, and

two of the doctors. Trust becomes a factor associated

with place of death because, in these interviewees’

experience, if an individual professional is deemed to

be trustworthy then patients and carers were likely both

to form a favourable opinion of the quality and

reliability of the service represented (domiciliary, hos-

pice, hospital,) and to take note of the professional’s

advice on place of death options. It followed that

patients and carers were unlikely to contemplate a home

death if a key professional involved in care at home was

found to be untrustworthy. This played an important

part in shaping patients’ and carers’ place of death

preferences which, in turn, influenced actual place of

death outcomes.

Cultures of practice

Strongly represented in the interview data were

features of professional activity that appear to make

up a previously unreported category of place of death

factors: cultures of practice. These are the quality of

inter-professional relationships, the ethics and habits of

professional practice, and the changing nature of practice

within hospices. While linked in reality, these factors can

be considered as analytically distinct.

Cultures: the quality of inter-professional relationships

Without exception, the front-line professionals spoke

of the importance of ‘good team-working’, both within

their immediate colleague groupings and across service

sector and organisational boundaries. This marker of

the quality of inter-professional relationships was under-

stood to be an essential feature of best practice in the

delivery of palliative care services to patients and carers,

and was a key factor in enabling cancer deaths to occur

at home or in hospice:

SCPN (2): y the times I’ve had good deaths at

home there’s been a good GP, an attentive knowl-

edgeable GP with an experienced team of profes-

sional nurses who have worked well in a team, and

who I’ve worked well with. And I’ve had good

support from people like (occupational therapists)

and anybody else that needs to be involved. If it has

all slotted in well it can be brilliant. We’ve all been

talking, we’ve all been in contact every day—not

perhaps meeting, but we’ve all been around and

we’ve had good working relationships, and good

relationships with the families.

This passage also illustrates what was seen by all care

providers to be the main inter-professional boundary

across which effective team-working had to be achieved

if a home death were to become viable: on the one side

were the specialist palliative care professionals (con-

sultants, SCPNs, other specialist health and social work

professionals), while on the other were the generic

professionals in primary health and social care involved

with dying patients, especially in home settings (GPs,

district nurses, social care staff).

All care providers expressed a strong belief that the

relatively recently developed medical and nursing

specialisms in palliative care should not result in the

de-skilling and marginalisation of primary care general-

ists, who until the 1980s had taken the lead in managing

the dying patient at home (Clark & Seymour, 1999). The

following extracts represent perspectives from different

‘sides’:

Palliative Care Consultant: (1): y you shouldn’t take

over from the primary care team. You should assist

them, be a support, a resource. They are the people

who should be in charge of the patient—90% of the

patient’s last year is spent at home, that’s what we

always say. And we are a resource for the GPs to dip

in and out of as they want, so we shouldn’t take over.

GP: y so palliative medicine has, in a way, taken

something away from us, and quite a lot of GPs, I

think, are frightened of (giving palliative care). They

feel, ‘Oh no, I can’t do that’.

Former MBHA manager: (We need to) look at the

capacity in primary carey (y) I think that there’s

probably been a de-skilling over time in palliative

care. (Among some local GPs) there was some anger

that the development of services at (the hospice) had

effectively de-skilled some of the GPs.

Successful management of the tensions involved could

lay the foundations for excellent collaborative working

and the occurrence of a ‘good’ death at home.

Unsuccessful management frequently resulted in an

inability of specialist or non-specialist staff to respond

quickly enough to situations where a patient’s condition

deteriorated, the all too frequent outcome being that a

patient is admitted to hospital as an emergency case, to

die there soon after. The nursing professionals all held

that the quality of GP involvement in the care of

terminally ill patients varied markedly, and that poor

quality involvement lessened the chances of a home

death.

Cultures: the ethics and habits of professional practice

The second dimension of this category involves a set

of ideas and values that professionals hold about what

constitutes ‘good practice’, together with their estab-

lished routines of professional behaviour with regard to

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–2607 2605

the making of referrals, the giving of advice and

information to patients, carers and colleagues, and the

pursuit of particular courses of action. The profes-

sionals’ accounts indicate that this shapes place of death

outcomes in diverse ways, but most obviously by

steering patients into particular care settings and care-

package arrangements. For example, a specialist pallia-

tive care nurse and a palliative care consultant both

explained that in the catchment area of the larger

hospice a culture of practice had grown up among many

GPs and other health care professionals such that a

hospice referral was viewed as normative and proper:

SCPN (1): y I think a culture develops within the

health care professions that you access those beds

because they are therey so it actually becomes a

normal way of life. The culture changes and (the

hospice) is seen as a very good place. It’s seen as a

centre of excellence, so perhaps hospital staff see it as

a place where people who are dying should go.

Palliative care consultant (1): (Given the acceptance

of the hospice locally) I think you have to be really

strong-minded, in this area, to die at home.

Front-line professionals also indicated that a funda-

mental aspect of their practice was to make judgements

about the suitability of the support and care received by

patients in particular settings, especially at home. While

conducting evaluations the professionals drew on a

stock of experiential and personal knowledge, as well as

upon professional guidelines, about what was acceptable

and proper, and about what constituted a ‘good death’.

SPCN (3): Like the man I saw this morning. He’s

obviously deteriorated, he’s off his legs. But to him

that wasn’t a consideration—he was still going to

struggle to the toilet, he wasn’t going to let anyone

take him, he was still going to drag himself upstairs.

But there was no way he could do that, if he

attempted it he was going to fally I’ve often thought

about this—a lot of cancer patients can’t possibly see

themselves as the rest of us see them.

Cultures: the changing nature of medical practice within

hospices

Another factor involves the national shift within

hospices towards greater medical management of

terminally ill patients, especially for pain and symptom

control, with a related increase in the number of patients

who attend hospices as day-cases, or who return home

after short in-patient stays. In essence, this shift has

‘opened up’ hospices. The two hospices in the locality

have followed this path, and hospice-based professionals

reported a marked increase in their patient throughput

rates as a result, together with the establishment of a

more clearly defined selection policy for bed occupancy:

Palliative Care Consultant (2) (In the hospice)y we

are a bit more (selective) about the patients we take

in—we’re no longer just a good nursing home, which

is what a lot of hospices werey We’re more

structured, we have a discharge rate, patients are

moving between different parts of the servicey

This meant that a greater proportion of cancer

patients in the area come into contact with hospice

services than was the case some years ago. The

significance of this for place of death outcomes hinges

on the fact that once in direct contact with a hospice

patients often form a preference to be cared for and to

die there.

Hospice Medical Director: y within 24 h people’s

(previously negative) concept of the hospice is

changed, 100% usually. A person that comes in

terrified is, within 24–48 h, so relieved to be within

the safety net. That is sometimes a problem, because

we can be too safe and comforting and then they

don’t want to leave.

Hospice Volunteer Worker: (Patients) come in and

they sit and chat, and they have a lovely lunch, if

they’re able to eat, I mean we cater for a special

diety Especially for a patient who lives alone, it may

be the best meal that they have in a day, so that’s very

important for them. You get people who will tell you

the first visit that they’re very frightened, because

they’re very apprehensive with what they’re going to

face when they come into the hospice. And yet by the

end of the day they’re so bright, they’ve really

enjoyed it. We try to get them laughing, I think that’s

very important, and they go away having had a

lovely day, hopefully—I mean they say that to you,

as they leave the hospice, they’ve really enjoyed it and

they’re looking forward to the next time.

In this way, the changing nature of practice within

hospices can be seen as a factor influencing the place of

death of cancer patients because, by increasing patient

throughput, it bolsters patient demand for a hospice

death, serving to maximise deaths in such settings within

the constraints of bed numbers.

Confirmation of other factors

Finally, other factors identified in the literature that

find confirmation in the accounts of our interviewees

are: patient demographic and social characteristics,

tumour type, and distance from services. However,

contrary to the socio-economic pattern reported in the

literature that home death rates are higher among the

more economically advantaged (Higginson et al., 1999),

a consultant and specialist palliative care nurse both

observed that patients from lower-class backgrounds

had an increased chance of dying at home because they

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–26072606

had longstanding family support networks close by; in

contrast, professional people who had moved in retire-

ment to Lake District localities were often without such

networks in close proximity. These observations find

support in the analysis of 6900 cancer deaths in the

study area, where ward level deprivation had no effect

on the probability of dying at home, though it did

predict a greater likelihood of dying in hospital (Gatrell

et al., 2003).

Discussion

Whether as front-line care providers, service managers

or a volunteer, interviewees have confirmed known

predictors, directed attention to fresh dimensions of

these known factors, and brought to light new factors.

There was a high degree of internal consistency in the

professionals’ accounts. The new factors that have

surfaced reflect the perspectives of key social actors in

cancer death scenarios. These professionals, especially

those with care delivery roles, are individuals whose

daily working lives are creative forces shaping the service

contexts in which terminally ill cancer patients live out

their last weeks and die in particular settings. Thus their

death management responsibilities play an important

part in constructing the social conditions leading to

particular place of death outcomes. At the same time,

these actors are in turn embedded in service infrastruc-

tures that place constraints, rules and meanings upon

how they can act and what can be achieved. Highlighted

is the contingent, developmental and potentially shifting

nature of place of death outcomes, and brought into

view are factors that are amenable to change through

policy and practice developments. Such factors provide

a helpful counterweight to the largely ‘fixed’ factors

identified in epidemiological studies: sex, age, socio-

economic status, distance from services, and tumour

type.

The findings can only be suggestive given the small

number of interviews undertaken, the location of the

study in a single area, and the fact that the interviews

were not designed to be in-depth explorations of the

perceived factors associated with place of death (inter-

viewees were not prompted to comment on the salience

of particular factors derived from the literature). In

addition, the absence of hospital-based specialist pallia-

tive care beds in the study area means that the findings

are inevitably partial. With the exception of one of the

palliative care consultants who worked from a hospital

base, the perspectives on place of death are those of

professionals in hospice and community-centered service

locations (though some interviewees also had responsi-

bilities in hospital settings).

Despite these study limitations, the findings sum-

marised in Table 1 do signal strongly that qualitative

data on factors associated with place of death

have the potential to add significantly to knowledge

generated in a quantitative tradition. The same is likely

to be true of interviews with informal carers (Thomas

et al., 2003).

A feature of the professionals’ accounts is that

place of death factors are, in reality, both inter-related

and compounding. This has not been examined here

because the purpose has been to document factors in

their specificity, in keeping with the extant literature.

However, in actual life and death situations, the factors

either combine to produce particular place of death

outcomes, or work against one another to make such

outcomes more uncertain. Further research could

usefully detail how these factors typically interact.

Conclusion

In the context of UK palliative care policy commit-

ments to increase the proportion of cancer deaths

occurring in patients’ homes, this paper has examined

factors associated with the location of such deaths. The

research literature on place of cancer death predictors, a

predominantly quantitative research tradition, was

found to comprise of two types of study: geo-epidemio-

logical interrogations of routinely collected death

registration data, and prospective and retrospective

cohort studies of terminally ill cancer patients. This

provided the background for the presentation of

findings from a study using qualitative interview data

to examine factors associated with the place of death of

cancer patients in one area. Interviews with 15 palliative

care professionals generated findings that not only

confirmed and considerably enriched understanding of

known factors, but also brought new factors into view.

New factors could be grouped under the headings:

service infrastructure, patient and carer attitudes, and

cultures of practice.

Acknowledgements

Thanks are extended to the palliative care profes-

sionals who agreed to be interviewed, and to Sara

Morris, the project’s Research Associate, for conducting

the interviews with considerable skill. The Research and

Development Department, NHS Directorate of

Health and Social Care North, is thanked for generously

funding this research (Grant Ref: RDO/28/3/10).

The author is grateful to Tony Gatrell and David Clark

for their feedback on an earlier draft, and to this

journal’s referees for their extremely helpful comments.

Thanks, also, to Mildred Blaxter for her valuable

editorial advice.

ARTICLE IN PRESSC. Thomas / Social Science & Medicine 60 (2005) 2597–2607 2607

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