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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: [email protected] (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
References
Brazil, K., Bedard, M., & Willison, K. (2002). Factors
associated with home death for individuals who receive
home support services: a retrospective cohort study. BMC
Palliative Care. http://www.biomedcentral.com/1472-684X/
1/2.
Brown, M., & Colton, T. (2001). Dying epistemologies: an
analysis of home death and its critique. Environment and
Planning, 33, 799–821.
Bruera, E., Sweeny, C., Russell, N., Willey, J., & Palmer, J.
(2003). Place of death of Houston area residents with cancer
over a two-year period. Journal of Pain and Symptom
Management, 26(1), 637–643.
Cantwell, P., Turco, S., Benneis, C., Hanson, J., Neumann, C.
M., & Bruera, E. (2000). Predictors of home death in
palliative care patients. Journal of Palliative Care, 16(1),
23–28.
Cartwright, A. (1991). Changes in life and care in the year
before death 1969–1987. Journal of Public Health Medicine,
13(2), 81–87.
Clark, D., & Seymour, J. (1999). Reflections on palliative care.
Buckingham: Open University Press.
Clifford, CA., Jolley, DJ., & Giles, G. G. (1991). Where people
die in Victoria. Medical Journal of Australia, 155(7),
446–451.
Department of Health (2000). The NHS cancer plan: a plan for
investment. A plan for reform. London: Department of
Health.
Department of Health. (2001). Caring for cancer patients at
home, 25 July 2001. http://www.doh.gov.uk/newsdesk/
latest/4-naa-25072001.html.
Duffy, J. A., Irvine, E. A., & Shaw, D. R. (2002). Cancer deaths
in Dundee—a comparative study. Progress in Palliative
Care, 10(6), 280–282.
Dunlop, R. J., Davies, R. J., & Hockley, J. M. (1989). Preferred
versus actual place of death: a hospice palliative care team
experience. Palliative Medicine, 3, 197–210.
Ellershaw, J., & Ward, C. (2003). Care of the dying patient: the
last hours or days of life. British Medical Journal, 326 (1
January 2003), 30–34.
Gatrell, A. C., Harman, J. C., Francis, B., Thomas, C., Morris,
S. M., & McIllmurray, M. B. (2003). Place of death: analysis
of cancer deaths in part of north-west England. Journal of
Public Health Medicine, 25(1), 53–58.
Glaser, B., & Strauss, A. (1967). The discovery of grounded
theory. Chicago: Aldine.
Grande, G. E., Addington-Hall, J. M., & Todd, C. J. (1998).
Place of death and access to home care services: are certain
patient groups at a disadvantage? Social Science &
Medicine, 47, 565–579.
Herd, E. B. (1990). Terminal care in a semi-rural area. British
Journal of General Practice, 40, 248–251.
Higginson, I. J. (1999). Which cancer patients die at home?
District Data for North West Region. Fact Sheet No. 31,
Hospice Information Service, London.
Higginson, I. J., Astin, P., & Dolan, S. (1998). Where do
cancer patients die? Ten-year trends in the place of
death of cancer patients in England. Palliative Medicine,
12, 353–363.
Higginson, I. J., Jarman, B., Astin, P., & Dolan, S. (1999). Do
social factors affect where patients die: an analysis of 10
years of cancer deaths in England. Journal of Public Health
Medicine, 21, 22–28.
Higginson, I., & Priest, P. (1996). Predictors of family anxiety in
the weeks before bereavement. Social Science & Medicine,
43(11), 1621–1625.
Higginson, I. J., & Sen-Gupta, G. J. A. (2000). Place of care in
advanced cancer: a qualitative systematic literature review
of patient preferences. Journal of Palliative Medicine, 3,
287–300.
Hinton, J. (1994a). Can home care maintain an acceptable
quality of life for patients with terminal cancer and their
relatives? Palliative Medicine, 8, 183–196.
Hinton, J. (1994b). Which patients with terminal cancer are
admitted from home care? Palliative Medicine, 8, 197–210.
Hunt, R., Bonnett, A., & Roder, D. (1993). Trends in the
terminal care of cancer patients: South Australia,
1981–1990. Australian and New Zealand Journal of Medi-
cine, 23(3), 245–251.
Hunt, R., & McCaul, K. (1996). A population based study of
the coverage of cancer patients by hospice services.
Palliative Medicine, 10, 5–12.
Karlsen, S., & Addington-Hall, J. (1998). How do cancer
patients who die at home differ from those who die
elsewhere? Palliative Medicine, 12, 279–286.
Moinpour, C., & Polissar, L. (1989). Factors affecting place of
death of hospice and non-hospice cancer patients. American
Journal of Public Health, 79, 1549–1551.
Pritchard, R., Fisher, E., Tento, J., Sharp, S., Reding, D., &
Knaus, W. (1998). Influence of patient preferences and local
health system characteristics on the place of death. Journal
of the American Geriatric Society, 46, 1242–1250.
Seale, C., Addington-Hall, J., & McCarthy, M. (1997).
Awareness of dying: prevalence, causes and consequences.
Social Science & Medicine, 45(3), 477–484.
Sims, A., Radford, J., Doran, K., & Page, H. (1997). Social
class variation in place of cancer death. Palliative Medicine,
11, 369–373.
Thomas, C., Morris, S. M., & Clark, D. (2004). Place of death:
preferences among cancer patients and their carers. Social
Science & Medicine, 58(12), 2431–2444.
Thomas, C., Morris, S. M., & Gatrell, A. C. (2003). Place of
death in the Morecambe Bay area: patterns and preferences
for place of final care and death among terminally ill cancer
patients and their carers. Project Report. Lancaster: Institute
for Health Research, Lancaster University.
Thorpe, G. (1993). Enabling more dying people to remain at
home. British Medical Journal, 307, 915–918.
Townsend, J., Frank, A., Fermont, D., et al. (1990). Terminal
cancer care and patients’ preferences for place of death:
prospective study. British Medical Journal, 301, 415–417.