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1. District nurse roleT iintl ee tnwdo-s-dtaegcek
COPD: a review
Rebecca Disler and Anne Jones
Rebecca Disler, Lecturer, Faculty of Nursing, Health and Midwifery, University of Technology Sydney, Anne Jones, Lecturer,
Florence Nightingale School of Nursing, King’s College London Email: Rebecca.Disler@uts.edu.au
District nurses (DNs) are the core providers of
end-stage care in the community but appear to
have little contact with patients who suffer from
end-stage chronic obstructive pulmonary disease (COPD).
This review explored the literature surrounding end-stage
COPD patients and specifically aimed to establish what
role DNs do play in the management of patients with end-stage
COPD.
End-stage COPD
The World Health Organization (WHO) states that COPD
is a widespread disease and is the fourth most common cause
of death worldwide (WHO, 2004). COPD is characterized
by high symptom burden and poor prognosis with patients
seen to deteriorate over several years of prolonged, poor
respiratory function (Skilbeck et al, 1997; Lundh et al, 2006;
Seamark et al, 2007). Debilitating breathlessness is the most
prominent symptom, often resulting in marked physical and
social dysfunction, which commonly renders sufferers house-bound
(Gore et al, 2000; Gysels et al, 2007). The loss of social
role and physical restriction often cause psychological distress,
depression, anxiety and frustration, and overall poor quality
of life (QOL) (Cicutto et al, 2004; Elkington et al, 2005;
Habraken et al, 2009). The high impact of COPD on patients’
lives suggests they would be key candidates for community
Abstract
District Nurses (DNs) are core providers of end-stage care in the community
but appear to have little contact with patients suffering from non-malignant
diseases, such as chronic obstructive pulmonary disease (COPD). This
review found limited literature describing the role of DNs in end-stage
COPD care, and the studies that did touch on the subject restricted their
discourse to the frequency of interaction. A clear bias of end-of-life services
to patients with malignancy was noted, as well as a call for community
services to extend care to all end-stage patients regardless of underlying
disease. In addition, there was a further call for DNs to apply a more holistic
approach to care, as described in the literature. Finally, it was clear that
while ongoing community intervention is necessary for end-stage COPD
patients, support and training is essential to equip DNs to care for these
vulnerable patients.
KEY WORDS
Community health nursing w Nurse role w Palliative care w Chronic
obstructive pulmonary disease
service intervention, such as DNs, however, there is little
indication from the literature that this is the case. This review
aimed to highlight the lack of discussion regarding the DN
role in non-malignant end-stage patient care in the commu-nity,
and in particular the care of end-stage COPD patients.
Methods
A search of the literature was undertaken through the
OVID search engine in Medline (1950 to April 2010),
Embase (1980 to April 2010), Allied Complementary
Medicine Database (AHMED) (1985 to April 2010) and
Cumulative Index of Nursing and Allied Health Literature
(CINAHL) (1982 to April 2010) databases. The specific
search terms used are presented below:
w District nurse
w Nurse
w Nurse role
w Chronic obstructive pulmonary disease
w Pulmonary disease
w End-of-life care
w Palliative
w Community care.
These terms were searched individually and also mapped
to the Medical Subject Headings in each search engine.
Once all searchers were completed the results were com-bined
using the Boolean operator ‘AND’ which yielded 47
papers of which only four were found to fit the inclusion
criteria. As a result cross referencing, citation checks and
exploration of key authors and journals were performed.
These approaches created a thorough but by no means
exhaustive search. Papers were included if they were rel-evant
to patient’s experience of end-stage COPD and DN
role in end-stage COPD. This review included original
articles, reviews, discussion articles and editorials.
Results
From all searches a total of 68 sources were included in the
review: one randomized controlled trial, 39 studies (clini-cal,
comparative and phenomenological), 24 reviews, two
editorials, and two books. Of the 39 studies, the majority
related to COPD and patient experience of this disease.
There were four articles that referred to DNs’ involvement
in end-stage COPD, however, their main focus remained
on patient experience and the frequency of interaction as
opposed to the role that DNs carried out.
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2. Three key themes arose from the review of literature:
the needs of end-stage COPD patients; the role of the DN
in end-stage patient care; and the role of DNs in the care
of end-stage COPD patients. While the purpose of the
review was to explore the latter, it was felt necessary to first
discuss the general needs of end-stage COPD patients and
also to discuss the accepted role of the DN in end-stage
patient care generally.
Discussion
Needs of end-stage COPD patients
There is a substantial body of literature that describes the
high symptom burden and unmet needs of COPD patients
in their final stages of life (Skilbeck et al, 1997; Gore et al,
2000; Edmonds et al, 2001; Guthrie et al, 2001; Elkington
et al, 2005; Cicutto et al, 2004; Habraken et al, 2007).
In addition, the majority of studies also highlighted the
impact of advanced COPD on patient’s social functioning
and QOL, which was seen to lead to a high prevalence of
depression and emotional distress (Jones et al, 2004; Pang et
al, 2005; Lundh et al, 2006; Habraken et al, 2007; Rocker et
al, 2007; Seamark et al, 2007; Spathis and Booth, 2008). Ek
and Ternestedt’s (2008) qualitative study of patients within
the acute setting found that loss of social functioning led to
a loss of meaning and desire to plan for the future. Patients’
lack of understanding and access to information were also
consistently identified in end-stage COPD (Edmonds
et al, 2001; Blackler, 2004; Curtis et al, 2008; Jones et al,
2004; Pang et al, 2005; Seamark et al, 2007). Skilbeck et
al (1997) and Gore et al (2000) in their qualitative studies
both remarked that patients appeared to know little about
their illness. Blackler et al (2004) and Yohannes (2007) also
observed in their reviews that general practitioners lacked
knowledge about end-stage COPD, which may therefore
have led to further reduced patient knowledge. With high
symptom burden, emotional impact and lack of under-standing
about their disease, COPD patients clearly require
involvement and support from health-care professionals in
the community.
The literature also highlighted the similarities between
the needs of end-stage COPD patients and patients with
terminal cancer. The majority of studies found that end-stage
COPD patients suffered from an equal or greater
burden of symptoms compared with patients with malig-nancy
(Skilbeck et al, 1997; Edmonds et al, 2001; Coventry
et al, 2005; Freeman and Price, 2006; Goodridge, 2006;
Rocker et al, 2007; Gysels and Higginson, 2008). In addi-tion,
studies by Addington-Hall et al (1991), Claessens et
al (2000), Gore et al (2000) and Habraken et al (2009)
noted that although the symptoms of terminal COPD
and malignancy were similar, the former had a higher
impact on patients’ lives. Teno and Sheikh (2001) and
Murray et al (2008) observed that decreased physical
functioning occurred over a longer period in COPD
compared to malignancy, which others suggested resulted
in COPD patients being more commonly housebound
in their last year of life (Gore et al, 2000; McKinley et
al, 2004; Elkington et al, 2005;
Goodridge, 2006).
The presence of such severe
symptoms and largely house-bound
nature of end-stage
COPD provides a strong argu-ment
for intervention from care
services, such as DNs. The lit-erature,
however, indicates that
PALLIATIVE CARE
‘One of the main issues
felt to contribute to
the lack of care service
provision in COPD
was the unpredictable
trajectory of the disease.’
this is not the case with COPD
having markedly less contact with supportive commu-nity
services than patients with malignancy (Skilbeck
et al, 1997; Edmonds et al, 2001; Coventry et al, 2005;
Freeman and Price, 2006; Goodridge, 2006; McHugh et
al, 2007; Rocker et al, 2007; Gysels and Higginson, 2008).
Goodridge et al’s (2008) retrospective comparative study,
for example, found that only 2.8% of end-stage COPD
patients received palliative care at home compared with
37.4% in patients with lung cancer. Habraken et al’s (2009)
study raised the question as to why the traditional focus of
palliative on quality of life is not transferred to address the
clear issues seen in end-stage COPD.
One of the main issues felt to contribute to the lack
of care service provision in COPD was the unpredict-able
trajectory of the disease. Because of the associ-ated
difficulties in care planning, patients are unlikely to
engage with services until they experience an acute crisis
(Coventry et al, 2005). Care is therefore largely hospital
driven with patients experiencing ad hoc care outside
the secondary care sector (Gore et al, 2000; Heffner et al,
1996; Harris 2007; Spathis and Booth, 2008). In addition,
Spence et al (2009) in their study and Spathis and Booth
(2008) and Curtis et al (2008) in their reviews suggested
that healthcare professionals’ uncertainty in prognosis
leads to a lack of patient understanding of the terminal
nature of COPD. As a consequence, there was reluctance
in both parties to engage supportive care services with
end-stage COPD patients.
It is clear that end-stage COPD patients have marked
physical and emotional needs. The question then remains
as to why these patients are not engaged with community
services such as DNs and how DNs’ established skills in
end-stage care could be transferred to the generic needs of
this vulnerable patient group.
End-stage patient care
Rose and Glass (2006) described district nursing as a
holistic approach to health care that is ‘flexible and respon-sive
to patients’ needs’. Studies investigating DN roles
described DNs as providing clinical care, emotional sup-port
and coordination of care services in the community
(McIlfatrick and Curran, 2000; Shipman et al, 2005; Burt
et al, 2008). In addition, were seen as the health-care pro-fessionals
who most frequently interacted with patients in
the community (Shipman et al, 2005). Palliative care was
considered to be a central part of this role and DNs the
core providers of community-based palliative care (Elias
British Journal of Community Nursing Vol 15, No 9 429

3. 1999; McIlfatrick and Curran 2000; Shipman et al, 2005;
Burt et al, 2006; Rose and Glass, 2006).
While central to community care, district nursing is not
without its difficulties. McIlfatrick and Curran (2000) and
Rose and Glass (2006) described a tension between holistic
and task-oriented nursing, and observed that in end-stage
care nurses were often more focused on routine physi-cal
tasks than on the psychosocial aspects of ‘presencing’.
Bertero (2002), Wright (2002), Rose and Glass (2006) and
Burt et al (2008), all commented that the persistent focus
of society on the ‘scientific’ aspects of health care was seen
as a further hurdle to holistic care. Forbes and While’s
(2009) and Barnett’s (2006) discussion pieces noted that
while ‘presencing’ and psychological support are poorly
defined, they are nevertheless imperative to holistic care.
Regardless of the societal and infrastructural pressures,
DNs remain the key providers of end-stage care in the
community. However, the literature which describes this
established role has mainly focused on patients with ter-minal
malignancy. This is mirrored in the palliative care
literature which also predominantly focuses on those with
malignant disease, making little comment about the treat-ment
of sufferers of non-malignant diseases, such as COPD
(Bertero, 2002; Wright, 2002; McIlfatrick and Curran,
2004; Taylor et al, 2005; Dunne, 2005; Lehman, 2005;
Shipman et al, 2005; McVeigh, 2006; Rose and Glass, 2006;
Burt et al, 2008). The goals of palliative care are appropriate
for any end-stage patient, for example, symptom manage-ment
and increased comfort and quality of life (Blackler,
2004; Burt et al, 2008; Rocker et al, 2007; Freeman and
Price, 2006). It follows, therefore, that DNs should extend
their established skills in end-stage care to those with
non-malignant end-stage disease, such as patients with
end-stage COPD.
End-stage COPD: the role of the DN
Limited literature does exist which describes the role of
the DN in end-stage COPD. Four studies discussed DN
interaction with COPD patients. Lundh et al’s (2006) phe-nomenological
study interviewed DNs about their role in
COPD care, but this did not relate to patients with end-stage
disease. Regardless, the main roles established through
these interviews were that DNs:
w Created participation from the patients
w Educated patients about their medications and smoking
cessation
w Worked to coordinate between different health services
w Performed clinical tasks.
Exley et al’s (2005) qualitative study interviewed health
professionals, patients with end-stage cancer and end-stage
cardio-respiratory disease. They did note DN contact in
relation to patients’ access to services in end-stage COPD,
however, there was no discussion of the actual role played.
Spence et al (2009) similarly used focus groups to explore
health and social care professionals involved in the care of
patients with advanced COPD. However, the discussion
mainly focused on the barriers to providing care to this
patient group rather than the patients’ interaction with
these professionals. Gysels and Higginson (2008) also
explored the provision of care to end-stage COPD patients
through interviews of patients attending outpatient con-sultations.
Again, the discussion surrounded access and lack
of contact between DNs and end-stage COPD patients
rather than the DN role. They related a conversation with
an individual with moderate-severe COPD and ongoing
debilitating symptoms and breathlessness. This gentleman
had seen a DN four times in three years for non-COPD
related interventions. However, in contrast, his neighbour,
who had malignant disease, received frequent support visits
and in the final stages, daily visits from DNs. Enquiring
why he was not seen in the same way, he was told that he
‘looked well’.
Others did briefly note the presence of DNs in the care
of end-stage COPD patients, however, their discussion was
again restricted to the frequency of interaction. Edmonds
et al (2001), who compared patients with terminal malig-nancy
with end-stage COPD patients for example, found
that 39% of end-of-life COPD patients had contact with
DNs (compared with 50% in patients with malignancy)
but did not go further to discuss the actual interaction
undertaken. This was similar in studies by Skilbeck et al
(1997) and Elkington et al (2005). Skilbeck et al’s (1998)
later study, however, did in fact note that the interaction
between DNs was strictly task based but again this was
the extent of the discussion. Again in Reinke et al’s (2007)
qualitative study investigating perceptions of transitions in
end-stage COPD, nurses were identified as participants in
this study but their perceptions were not discussed nor the
roles they undertook in care.
While the above studies identified the low interaction
with DNs, others overlooked it altogether. Blackler et al
(2004), Exley et al (2005), Au et al (2006), Heffner et al
(1996), Seamark et al (2007) and Burt et al (2008) all spoke
comprehensively about bridging the gap of service provi-sion
for COPD patients but failed to examine the potential
role of the DN. Elkington et al (2005) in particular, noted
that GPs struggled to find time to maintain interaction
with these patients, but again failed to identify that DNs
could fulfil part of this role. Gysels et al’s (2007) systematic
review and Spathis and Booth’s (2008) discussion piece
also noted the low access to services in end-stage COPD
and the need for community support from respiratory
nurse specialists but failed to mention DNs.
In addition to the lack of contact with end-stage COPD
patients, there was also a recognized lack of clarity in the
DN role in this care. Burt et al (2008) and Spence et al
(2009) noted that lack of recognition of the DN’s role
inhibited referrals of end-stage COPD patients. Spence et
al (2009) in particular called for further research into the
delivery of palliative care to end-stage COPD patients to
clarify such roles and the care which is currently being
provided.
It is clear that there is substantial literature which
demonstrates that DNs have a defined role in long-term
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430 British Journal of Community Nursing Vol 15, No 9

4. PALLIATIVE CARE
Key points
w End-stage chronic obstructive pulmonary disease (COPD) patients are
under serviced in the community.
w District nurses have the established skills and are in an ideal position to
support end-stage COPD patients.
w Infrastructural change and training is required to equip the workforce to
support these vulnerable patients.
condition and malignant disease management as described
above. However, these established skills do not appear to
extend to patients with end-stage COPD. The lack of rec-ognition
of the DN role in end-stage COPD and conse-quent
low referrals grossly disadvantages end-stage COPD
patients and goes some way to explain the lack of support
for these patients in the community.
Implications for practice
Home-based end-stage care has already been seen to
improve QOL indicators in patients with malignant
disease, with improvements in awareness of illness, lev-els
of symptoms, vitality and self-rated health. Seale
(1990), Addington-Hall and Higginson (2001), Skilbeck
et al (1997), Elkington et al (2005), Exley et al (2005)
and Rocker (2007) all illustrate the need for increased
contact between end-stage COPD patients and primary
care services, with Roberts et al (2008), Bailey (2004) and
Goodridge (2006) describing how ongoing contact with
health-care professionals minimizes anxiety and severity
of dyspnoea in the final stages of life. This review high-lights
the need for DNs to be supported in extending the
delivery of care to patients with non-malignant terminal
disease, such as COPD (Aiken and Butner, 2006; Rocker
et al, 2007).
These sentiments are supported by the recent national
strategy: The end of life care strategy: promoting high quality
care for all adults at the end of life (Department of Health
(DH), 2008). Both these strategies outlined the needs for
community service provision to all end-stage patients,
regardless of disease, and a greater focus on holistic care
provision for all patients. There was a clear recognition in
the literature however, that if DNs are required to interact
with COPD patients they will require appropriate training,
resource provision and support (McIlfatrick and Curran,
2004; Exley et al, 2005; Astin and Closs, 2007; Spathis and
Booth, 2008).
Conclusion
DNs have a clear and established role in community-based
end-of-life care. This care, however, is mainly
restricted to patients with malignancy. COPD patients
experience similar, if not more pronounced, symptoms
to those with terminal malignancy and yet have little
to no contact with DNs. Further research is required to
extend our understanding of what support services, such
as DNs, can be provided to end-stage COPD patients in
the community.
While little literature exists on this topic there are clear
directives from the reviewed literature and the DH which
suggest that patients with chronic and end-stage disease,
such as COPD, require ongoing community support to
enable appropriate management. In addition, support and
training of DNs must be implemented to equip them with
the necessary skills to care for this vulnerable patient group.
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