ORIGINAL ARTICLE

Hospital care following emergency admission: a critical incident

case study of the experiences of patients with advanced lung
cancer and Chronic Obstructive Pulmonary Disease
Cara Bailey, Alistair Hewison, Eleni Karasouli, Sophie Staniszewska and Daniel Munday

Aims and objectives. To explore the experiences of patients with advanced

Chronic Obstructive Pulmonary Disease (COPD) and lung cancer, their carers What does this paper contribute
and healthcare professionals following emergency admission to acute care hospi- to the wider global clinical
tal. community?
Background. Emergency admissions of people with lung cancer and COPD have • Understanding the patient experi-
increased and there is global concern about the number of patients who die in ence is fundamental to improving
hospital. The experience of patients with advanced lung cancer and COPD admit- the quality of care – this is the
first paper to report the accounts
ted to hospital as an emergency when nearing the end of life has not previously
of patents in the UK with lung
been investigated. cancer and COPD who were
Design. Qualitative critical incident case study. nearing the end of life, admitted
Methods. Semistructured interviews were conducted with 39 patients (15 with for ‘emergency’ hospital care.
COPD and 24 with lung cancer), 20 informal carers and 50 healthcare profes- • This study offers important
sionals, exploring patients’ experiences of emergency hospital admission. Inter- insights of hospital care for peo-
ple with complex illness and
views took place after admission and following discharge. Participants nominated
those near the end of life.
relatives and healthcare professionals for interview. Data were analysed themati- • Care can be experienced in dif-
cally. ferent trajectories – recognising
Results. Patients were satisfied with their ‘emergency’ care but not the care they this can help nurses identify
received once their initial symptoms had been stabilised. The poorer quality care where more attention is needed
to improve patients’ experience
they experienced was characterised by a lack of attention to their fundamental
during the hospital admission,
needs, lack of involvement of the family, poor communication about care plans help policymakers restructure
and a lack of continuity between primary and secondary care. A conceptual care services to better meet
model of ‘spectacular’ and ‘subtacular’ trajectories of care was used to relate the patients’ needs and encourage
findings to the wider context of health care provision. educators to engage nurses (and
Conclusion. The complex nature of illness for patients with advanced respiratory students) in identifying areas in
need of improvement.
disease makes emergency hospital admissions likely. Whilst patients (with COPD
and lung cancer) were satisfied with care in the acute ‘spectacular’ phase of their

Authors: Cara Bailey, PhD, MN, RGN, Senior Lecturer, Nursing,
Institute of Clinical Sciences, Medical School, College of Medical
and Dental Sciences, University of Birmingham, Birmingham, UK;
Alistair Hewison, PhD, MA, BSc, RN, Senior Lecturer, Nursing,
Institute of Clinical Sciences, Medical School, College of Medical
and Dental Sciences, University of Birmingham, Birmingham, UK;
Eleni Karasouli, PhD, MSc, BSc, CPsychol, Research Fellow, Divi-
sion of Health Sciences, Warwick Medical School, University of
Warwick, Coventry, UK; Sophie Staniszewska, DPhil (Oxon), BSc
(Hons), Senior Research Fellow, RCN Research Institute, Division
of Health Sciences, Warwick Medical School, University of War-
wick, Coventry, UK; Daniel Munday, PhD, MBBS, FRCP, Associ-
ate Clinical Professor and Honorary Macmillan Consultant in
Palliative Medicine, Division of Health Sciences, Warwick Medical
School, University of Warwick, Coventry, UK
Correspondence: Cara Bailey, Senior Lecturer, Nursing, Institute of
Clinical Sciences, Medical School, College of Medical and Dental
Sciences, University of Birmingham, Birmingham B15 2TT, UK.
Telephone: +44 0121 4143657.
E-mail: C.bailey.2@bham.ac.uk

© 2016 John Wiley & Sons Ltd

Journal of Clinical Nursing, doi: 10.1111/jocn.13170 1
C Bailey et al.
admission, more attention needs to be given to the continuing care needs of
patients in the ‘subtacular’ phase.
Relevance to Clinical Practice. This is the first study to explore the patient experi-
ence of acute care following an emergency admission and identifies where there is
potential for care to be improved.
Key words: complex care, COPD, emergency admission, end of life care, lung
cancer, nursing, quality of care, supportive care
Accepted for publication: 28 November 2015
Introduction
Emergency admissions to hospital have been increasing over
the past two decades (Blunt et al. 2010). The reasons for
such admissions are complex and although there has been a
number of interventions to reduce admissions and move
care into the community (Edwards 2014, Department of
Health (DH) 2009), their impact has been limited (Roland
& Abel 2012). Emergency admissions of people with cancer
have also been increasing and now, exceed 160,000 per
year in England (Hospital Episode Statistics (HES) 2011).
Similarly, admission for COPD has risen to 135,000 per
year, making it the second most common diagnosis for
medical admissions (Calderon-Larranaga et al. 2011).
Furthermore, up to a quarter of hospital admissions
occurs in the last year of life (Seale & Cartwight 1994) and
the frequency of hospital admission increases towards the
end of life, and a third of such admissions occur in the
month before death (ONS 2011). Around half of deaths in
the UK occur in hospital, which is also the case in other
high income countries including USA, Canada and Japan
(Broad et al. 2013). COPD and cancer are amongst the
common causes of death in the UK with 63% of COPD
deaths occurring in hospital (NEoLCIN 2012).
Whilst hospital cancer deaths have declined over recent
years, the proportion of lung cancer deaths in hospital
remains high with cancer accounting for 41% of all deaths
and lung cancer making up 43% of that total (NEoLCIN
2012). In addition, admissions for lung cancer are the most
common among people with cancer who go into hospital,
constituting more than a quarter, even though lung cancer
accounts for around 7% of cancers (Yates & Barrett 2009;
HES 2011). Between 2009 and 2010, there were 72,115
hospital admissions of patients with lung cancer, of which
43,215 (60%) presented at the Emergency Departments
(ED) in the UK (HES 2011). Patients admitted with lung
cancer and advanced COPD present with similar symptoms
2 Journal of Clinical Nursing
of breathlessness and are drawn from a similar population,
particularly older people who used, or continue to smoke.
However, few studies have explored the hospital experi-
ences of these patients post admission.
Background
Much of the recent interest in hospital admissions at the
end of life has focused on reducing the time people
approaching the end of their life spend in hospital as it has
been suggested that this would release resources to better
support people in their preferred place of care (NAO 2008;
Gomes et al. 2010, Leadbeater & Gadber 2010). It has also
been a key policy target in English Health care for a num-
ber of years to increase choice for people at the end of life
with regard to the location of care (DH 2008, The Choice
in End of Life Care Programme Board 2015). Emergency
admissions constitute a significant financial cost for health
services and are frequently unpleasant and confusing for
patients (Purdy & Griffin 2008). In addition, over 50% of
complaints received about hospital care relate to incidents
that occur around the time of death (Al-Qurainy et al.
2009).
Poor quality of care is a particular concern for those
with complex illnesses, such as cancer, who require conti-
nuity in care (RCP & RCR 2012). In England, the End
of Life Care Strategy (Department of Health 2008)
emphasises the need for high quality end of life care for
patients with advanced and life threatening illnesses in all
settings including the hospital. Whilst studies have
explored the hospital inpatient experience of patients with
advanced disease, this has been largely from the perspec-
tive of bereaved carers (Rogers et al. 2000, Addington-
Hall & O’Callaghan 2009). There is a paucity of work
which has focussed directly on the patient experience of
hospital admission. To our knowledge, this is the first in-
depth study of the experience of this group of patients of
© 2016 John Wiley & Sons Ltd
Original article
the period following emergency admission. NICE Guid-
ance highlights the importance of ensuring patients have
a good experience of care, which is responsive to their
needs (NCGC 2012; NICE 2014; Staniszewska et al.
2014), and the purpose of this study was to examine
what those needs are.
In order to ensure that patients with advanced respiratory
diseases are appropriately supported and cared for in hospi-
tal, following an emergency admission, in-depth under-
standing of their experience of care is important if its
acceptability, effectiveness and appropriateness or relevance
– all components of quality (Maxwell 1984, 1992) are to
be determined. We present results from a qualitative study
of the experience of patients with end-stage lung cancer
and advanced COPD following emergency admission. The
accounts of patients, their carers and health care profession-
als involved in their care were accessed and analysed to
examine this area of practice.
Methods
The aim of the study was to explore the experiences of
patients with advanced COPD and lung cancer, their car-
ers and healthcare professionals following emergency
admission to hospital. A Critical Incident approach, using
the principles of Case Study method (Yin 2003), was
used to capture exploratory data likely to generate
insights on the patients’ experience. Case studies are help-
ful when ‘how’ or ‘why’ questions are being addressed,
there is little external control over events and the focus
is on a contemporary real-life context (Yin 1989). The
‘critical incident’ or ‘unit of analysis’ (Yin 1989) was the
emergency admission of patients with lung cancer or
COPD. Critical incident technique can be used in case
study research and is appropriate when the work is con-
ducted across several sites for the purposes of comparison
and seeking commonalities (Chell 1998). The ‘case’
encompassed the wider context of which the admission
was a part and involved exploring the admission process
and contingent contextual factors. This is consistent with
case study method, which incorporates the use of a range
of methods to collect the relevant data relating to the
study of factors, variables or behaviours that are ‘critical’
to the activity or event of interest and its associated out-
comes (Weatherbee 2010).
Design
The application of the critical incident case study (Chell
1998, Yin 2003) in this study involved in-depth semi-
© 2016 John Wiley & Sons Ltd
Journal of Clinical Nursing
The EURECA study – hospital experience
structured interviews with patients, their relatives/informal
carer(s) and key health professionals at two points in
their care: first as soon as possible after admission and
second, following discharge (or transfer to another ward).
A purposive sample of participants who had a diagnosis
of incurable lung cancer, or advanced COPD receiving
home oxygen (a marker for identification of COPD
patients suitable for inclusion in the study), admitted to
one of three hospitals (see Table 1) was identified.
Thirty-nine patients, 20 carers and 50 health care staff
were included in the final sample (see Table 2). The criti-
cal cases were made up of triads of participants (patient,
carer, health professional) who were involved in the
admission and the subsequent care of the patient.
Table 1 summarises the general (anonymised) details of the
recruitment sites. The research nurse or Clinical Nurse Spe-
cialist (CNS) at each site screened the emergency admission
list for eligible patients, then approached them on the ward
and explained the purpose of the study and gave them an
information sheet. Patients had at least 24 hours to consider
whether or not they wished to participate in the study. Written
consent was obtained and they were interviewed at the earliest
opportunity following admission. Recruitment took place
over an 18-month period to account for seasonal variation,
which can contribute to exacerbations in respiratory disease
and increase the number of patients admitted to hospital in
the Winter months (Donaldson & Wedzicha 2014).
Confidentiality was maintained at all times and details of
participants’ identities were known only to the recruiting
nurse and the research team directly involved in data collec-
tion and analysis. Ethical approval for the study was given
by the regional ethics committee (Ref 11/H1202/1). Permis-
sion in accordance with NHS Research Governance regula-
tions was granted for access to all sites.
Data collection
In the first interview, patients were asked about their expe-
rience of the period leading up to admission, the admission
process and their time in hospital following admission. Ini-
tial interviews took place with patients as soon as possible
after admission and lasted between 20 and 30 minutes.
They focussed on the events immediately prior to admission
Table 1 Recruitment sites
Hospital Site A Site B Site C
Type Teaching District General District General
Location City Market town City
Serving population 300,000 180,000 1,000,0000
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C Bailey et al.
Table 2 Sample
Data Further clarification
Patients screened 248
Eligible 55 (16 too unwell or died)
Interviewed 39
COPD 15 Male: 9/Female: 6
Lung cancer 24 Male: 14/Female: 10
Mean age 72 years LC: range: 55–90 years
COPD: range: 62–89 years
Died within three 16 LC: 14/24
months of interview COPD: 2/15
Carers 20
Healthcare professionals 50
that resulted in the patient being taken to hospital and the
experience of the admission itself. The follow-up interviews
were conducted after the patients were discharged from
hospital and provided an opportunity to explore patients’
experiences of hospital care and the outcome(s) of the
admission. These were a little longer taking between 30
and 40 minutes. Interviews with carers were arranged
whenever possible to coincide with the second patient inter-
view. Interviews were conducted separately, except where
patients became fatigued or requested a joint interview.
Patients nominated up to two community and hospital
health professionals for interview who could provide an
account of the admission, thus ensuring examination of the
‘case’ from a number of perspectivs.
Analysis
Digital audio-recordings of interviews were transcribed ver-
batim. Transcriptions were anonymised and managed using
NVIVO version 10 qualitative data analysis software (QSR
International 2012). A realist approach was taken in the
analysis (Robson 2011), which involves axial coding where
codes from a conceptual framework are allocated to chunks
of transcripts. This is followed by selective coding to iden-
tify comparisons and interpretations. A thematic analysis
template (King 2004) derived from the interview schedule
was used to develop the conceptual framework. Initial codes
were identified by two members of the team (EK and FB).
Additional codes were added following repeated readings of
the transcripts and discussion among the research team. The
final template was agreed by DM, EK, FB and CB. To test
the reliability of the analysis, CB randomly selected four
transcripts (coded by EK and FB) and applied the template
independently (Miles & Huberman 1994). A high level of
agreement in the identification of the codes was achieved.
Overarching themes were identified from the template
analysis and agreed by CB, EK, AH and DM. The themes
4 Journal of Clinical Nursing
were discussed and refined by the project steering group
and reviewed by a service user group made up of patients
with lung cancer, COPD and their carers. The emerging
insights were discussed with an external reference group*
resulting in further refinement analysis.
Results
The unpredictable nature of emergency admissions and
rapid turnover of patients in the ED and on admission
wards affected recruitment. Table 2 summarises the charac-
teristics of the participants. Table 3 is an anonymised ‘pen
portrait’ of one of the participants in the study. Len’s situa-
tion was similar to that of the other participants in the
study and demonstrate the challenges and complex issues
that people with COPD and advanced respiratory illness
face following an emergency exacerbation.
Figure 1 illustrates the pathway through the hospital
followed by the patients involved in the study. The average
in-patient stay for patients with lung cancer was eight days
and 16 days for those with COPD. The ‘normal pathway’
involved being admitted to ED, then to an Acute Medical
Unit (AMU) (the AMU is a short stay unit where patients
are monitored and stabilised following transfer from the
ED). For some patients, this was the first point of entry to
hospital when referred directly as an emergency by their
General Practitioner (GP). Patients were then transferred
from the AMU to a ward and normally transferred to
another ward four to five days later. Generally once the
hospital episode was completed, patients with COPD were
discharged from the respiratory ward, whilst those with
lung cancer were discharged from a variety of wards.
The emergency admission
The majority of the patients interviewed had been taken to
hospital by ambulance and then admitted. They shared pos-
itive accounts of the care received from the ambulance
crews and in most cases were also pleased with the initial
treatment received in the ED. They reported that the para-
medics were brilliant, absolutely marvellous and that you
couldn’t ask for better. They were satisfied with the
response time and recalled that paramedics alleviated respi-
ratory symptoms rapidly by administering oxygen and inha-
lers.
*The Macmillan Cancer and Palliative Care Research Collaborative
(MacPaCC). A cancer charity which supports palliative care and funds
end of life care research
© 2016 John Wiley & Sons Ltd
Original article
Table 3 Pen Portrait
Pen Portrait ‘Len’
Len was an 84-year-old man who lived with his wife. An ex-
paratrooper, Len had led an active lifestyle. Following
significant deterioration in his health, he was diagnosed with
COPD seven years ago. Len described his situation as
debilitating, spending 90% of his time in his bedroom. His
wife worried he had not been out of the house for months,
‘He cannot venture too far due to the breathlessness’. Len had
attended the ED on numerous occasions requiring hospital
admission, ‘I kept coming in and out, in and out, I’ve been in
this hospital over the past five years forty times’. Len knew his
COPD was advanced and had been told ‘not to expect too
much’
Len lived opposite the GP surgery but rarely saw a doctor there.
He had a community matron but hardly ever contacted her; ‘I
know pretty well about myself now’ but he knew ‘I’ve got to
stop getting to the point where I’m so desperate I’ve got to call
an ambulance’. Len’s wife was his main support but she too
was in deteriorating health due to arthritis. Their son also
helped out
On his most recent admission, Len had collapsed at home. His
son had called an ambulance. Following a diagnosis of a chest
infection, his admission was prolonged due to ‘so much
confusion about that oxygen . . . I’ve been continually on it and
other times, they say you don’t need it. . .no sooner I went out I
was back [in hospital] again’. Len, his wife and the respiratory
Clinical Nurse Specialist felt his admission was appropriate. ‘I
needed to come in, because, although you’ve got district nurses
and that there, they can’t do everything’. Following one week in
hospital, Len was discharged home and prescribed home oxygen.
Several weeks later, he was readmitted for five days. This last
visit had been difficult for him especially as his wife had also
been ill and not able to visit him. Len had relied heavily on the
support from the hospital staff, ‘I was desperate to get home,
they are just so busy in there. They couldn’t come and do the
care that they should be doing, because there aren’t enough of
them’
Len died in hospital within six months after the first interview
The ambulance [staff] are good aren’t they? I can’t fault them at
all, not any of them. (B8, Wife: Lung Cancer)
Participants also felt that the initial response by the ED
staff was good and in some cases ‘brilliant’ with respiratory
emergencies being treated quickly.
We couldn’t knock the emergency team when we got in there. They
just worked on her, straightaway. (C13, Daughter: COPD)
However, once the symptoms which prompted the emer-
gency admission had been stabilised, patients entered the
recovery phase of admission (Fig. 1) and during this period
their experiences were less positive.
© 2016 John Wiley & Sons Ltd
Journal of Clinical Nursing
The EURECA study – hospital experience
We were happy with the care in A&E, it was when we got on the
ward we were a bit disappointed, really. (C4, Son: COPD)
Concerns about care emerged as four distinct themes;
lack of attention, poor communication of care plans, lack
of recognition of the expert family and a lack of continuity
in care when the patient was discharged.
Lack of attention
With the emergency situation resolved and the patient sta-
bilised, a period of ‘waiting’ ensued; waiting for test results,
waiting for a bed to become available and waiting to recover.
Just lay there for about 4–5 hours. Horrible place to be . . . just lying
there and waiting to go upstairs to have some tests. (A12, COPD)
The attention the patients received during the initial part
of their emergency admission meant their immediate care
needs were met in a timely way resulting in a positive expe-
rience. As their condition improved, they received less
direct attention, leaving them with feeling the quality of
care had declined. Patients wanted to go to the ward where
they knew the staff from previous hospital stays and were
confident that their supportive care needs would be a prior-
ity and when this did not happen they were disappointed.
The overall lack of attention evoked anger and distress and
there were a number of serious lapses in care.
I thought ‘You wouldn’t leave a dog like this’, so I wasn’t very
happy. (C9, Wife: COPD)
Patients recalled examples where their fundamental care
needs were not met.
I must have been in there [toilet] 20 minutes waiting to come out.
She left me sitting in there, basically they just didn’t take any
notice of the bell. They do sometimes do that. I think they do dis-
criminate about people if they’re a bit old or aged. I do deserve
respect. (C3, COPD)
One patient’s wife was concerned about her husband
who was in pain when she visited him on the ward. She
recalled her shock and anger at the way staff appeared to
ignore his need for analgesia.
He was sat on the edge of the bed, leant over that table in absolute
agony. I don’t know how long he’d been like this. I wished I’d
have stayed with him all night. But obviously you can’t, and I
know these people [hospital staff] are very, very busy. But if you
see somebody in pain, surely you go to them and say ‘Can I get
you something?’ He was in a lot of pain. (C9, Wife: COPD)
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C Bailey et al.
Many of the relatives were so disappointed about the
quality of care that they became concerned about the pro-
spect of future possible hospital stays. Indeed, one was so
concerned that she resolved to resist any future hospital
admissions:
She’s not going back in hospital. Any treatment will be at home
until the time comes, but she’s not going back in. (B1, daughter:
Lung Cancer)
During the recovery phase (Fig. 1), decisions were being
made and specialist assessments organised; however, it
seemed to the patient that ‘nothing is being done’ because
of the waiting involved and the lack of communication (as
described below). Patients felt more confident when nurse
specialists, such as the respiratory CNS, were involved in
providing individualised care which prepared them for dis-
charge home. However, this service was often only avail-
able in the later stages of their hospital admission.
The only person really who’s given me any confidence today is
[CNS], in as much as she’s told me that they’ve been doing the
wrong thing in giving me oxygen. She said ‘the oxygen is putting
you back’ and that’s where I’ve been going wrong. (C3, COPD)
The two phases of the patients’ admission experiences
were very different and they indicate that during the recov-
ery phase, the hospital service may be less effective in deal-
ing with the longer term health needs associated with
advanced illness (Table 3). The difficulties experienced by
the patients were often exacerbated by poor communica-
tion.
Poor communication
Problems with communication included information not
being conveyed accurately from medical teams to nursing
6 Journal of Clinical Nursing
Figure 1 Patient pathway.
staff resulting in ambiguity over care planning. Also,
patients and relatives reported the information they
received was vague and confusing.
It’s the lack of communication between all of them and with the
patient and, you know, their family, that is the biggest problem . . .
every time you spoke to a nurse, you know, they were either just,
like, changing over, or one was telling you one thing, one was tell-
ing you another. (C13, daughter, COPD)
Patients felt details about treatment and care, following
the initial ‘emergency’ phase, were not passed on to them.
It seemed like a long wait. [I: Did anyone explain the process to
you or what was going on?] No, no. (C7, COPD)
Compared with the level of communication and advice
the patients and their relatives reported receiving during the
‘emergency’ phase of the admission, the ‘recovery’ phase
was felt to be problematic because the pace of the informa-
tion flow was slower.
When patients were transferred to alternative wards or
to the care of different teams, the problems escalated.
Such problems included information and documentation
not being transferred with the patients or, in some cases,
being passed on incorrectly, as one patient’s daughter
explained:
She was handed over to other doctors, but what we’d agreed with
this doctor, and what another doctor told us, hadn’t been passed
over. So, once again, you’ve got to start again going through every-
thing to get things sorted for her. (C13, daughter, COPD)
Relatives often became the advocate for the patients dur-
ing this part of the hospital admission, but not all staff
recognised the contribution that family members could
provide in relation to care delivery and continuing patient
support.
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Original article
Lack of recognition of the ‘expert’ family
The relatives who participated in the study had helped in
the management of the patients’ conditions, often over
several years. However, the relatives felt their views were
not considered by the health care staff. They recalled that
staff seemed reluctant to accept their input. One relative
explained her concern about her mother’s pain, reporting
that the cause was not being investigated and treated. She
described how her mother telephoned her in distress and
that she had contacted ward staff to ask them to attend to
her mother’s pain. In another case, a patient’s daughter
tried to get the staff to speak to her or her brother about
her mother’s care and prognosis because her mother was
too ill to convey the information to the family at a later
stage.
She seemed to get confused with what was going on, this is what I
tried to point out to a nurse, that she needed to speak to myself or
my brother, because Mum wasn’t well enough to be doing that.
(C13, daughter, COPD)
The staff reluctance to involve the relatives during the
hospital admission was distressing for some family mem-
bers. On occasions, this was exacerbated by a lack of conti-
nuity between primary and secondary care settings, which
the relatives were often left to manage.
Lack of continuity of care
Service provision following discharge home was reported to
be disjointed and not delivered in accordance with care
plans agreed in hospital. This was confirmed by a number
of the healthcare professionals who were interviewed. Some
patients had their medication changed on hospital admis-
sion or they were prescribed oxygen therapy which, on
their return home, was amended or cancelled.
They took a lot of tablets off me [in the hospital], and my doctor
[GP] went mad, because they shouldn’t have done . . . I’m back on
all my old medication now . . . they shouldn’t have changed it.
(C3, COPD)
This was perceived as more problematic for patients with
COPD than those with lung cancer because of the greater
uncertainty concerning their prognosis.
What’s difficult about patients with COPD, it’s really hard to
gauge it [the end of life]. I think it’s a little bit easier with the lung
cancer, because they’ve got diagnostic indicators that they can go
by and the white cell counts and all these different things and they
get a prognosis. Whereas COPD it’s like you’ve got COPD, this is
© 2016 John Wiley & Sons Ltd
Journal of Clinical Nursing
The EURECA study – hospital experience
the treatment, go and get on with it. So it is a bit more difficult.
(C21, Clinical Case Manager: community)
There was a general feeling that those with a non-cancer
condition received less support even though they were near
the end of life.
I think if you have a cancer diagnosis, then I think you’re very well
supported. But I think people have a little bit more difficulty with
palliative care patients that have a non-cancer diagnosis, but a
deteriorating condition, long term, and especially when they reach
that end of life, of course COPD patients have the same type of
symptoms that cancer patients have in terms of their breathing,
pain, anxiety, the emotional side, but the resources aren’t available
to address that. (C14, Staff nurse, hospital respiratory ward)
For both groups, the lack of continuity between primary
and secondary care led to mismanagement of chronic and
life-limiting conditions once patients were discharged. One
nurse expressed her concern about discharge planning,
highlighting that some nurses did not recognise the particu-
lar needs of those with advanced respiratory conditions.
Does she need Oxygen at home? A care package? Equipment? It’s
part of the discharge planning process but it’s not always thought
of. (C30, Senior sister Palliative Care)
The lack of clear and comprehensive discharge planning
had implications for the patient once at home. In the fol-
low-up interviews, patients reported they were waiting to
hear from the hospital or their community services about
what was going to happen next. They expected something
to have changed following their admission to hospital and
were awaiting confirmation of their new care plan.
We’re waiting to hear from them, the [regional hospital], they said
a week or two . . . it’s actually three weeks [now] . . . I know they
say no news is probably good news, but waiting is the worst part.
You just want to know how long you’ve got. (C13, Lung Cancer)
The hospital healthcare professionals assumed that when
discharging patients ‘home’ to ‘community services’ that
community nurses and GPs would contact the patient soon
after discharge. However in the follow-up interviews, it
was clear that on many occasions this did not happen.
There’s probably a miscommunication. He was being discharged
on the Thursday and I think what the matron actually wanted, was
a settle visit. But they’d [district nurses] liaised with the ward, and
they were thinking he didn’t need a visit until Sunday. He didn’t
get one. (C14, Clinical Nurse Specialist: Hospital)
Many of the GPs and community nurses were concerned
about the lack of liaison with the hospitals and were frus-
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C Bailey et al.
trated by the limited information they received about the
patient during the admission, particularly with regard to
the goals of care, and changes in medication.
Sometimes we don’t know that they’ve gone into hospital . . . we’re
often not informed . . . we have contacted hospitals and wards
we’ve filled them in on the home situation and said when they’re
being discharged, let us know. They never do. It’s never happened
– not once. (C21, Clinical Case Manager: community)
Discussion
This study explored the experiences of patients with
advanced respiratory illnesses and those of their carers fol-
lowing emergency admission to hospital. Accounts of health
care staff were also collected. The data demonstrate that
patients generally received prompt care of their emergency
symptoms; however, the continuing management of their
condition in hospital and the planning of their care in the
second phase of admission was slow and problematic. The
care patients received in the ambulance and ED met their
immediate needs, contributing to a positive experience of
the emergency management of their condition. The most
common emergency presentation was respiratory difficulty.
Emergency management is based on the algorithm of
Airway, Breathing, Circulation, Disability and Exposure
(A-B-C-D-E) (Thim et al. 2012). In a sense, this epitomises
the ‘acute’ ‘curative’ approach to care situated in the
‘biomedical model’ (Earle 2010), designed to deal with
specific episodes of illness. Applying this tool enables staff
to identify the symptoms which need to be treated as a pri-
ority because they are life-threatening. As airway and
breathing are the first two items, patients presenting with
symptoms of severe breathlessness were treated as a prior-
ity. Once the breathlessness was stabilised, staff had other
priorities that required their attention. Consequently,
patients felt that once their acute breathlessness was sta-
bilised, their other care needs were not afforded the same
level of attention.
Trajectories of care
Two trajectories of end of life care in the ED have been
identified in previous studies; the ‘spectacular’ and the ‘sub-
tacular’ trajectory (Bailey et al. 2011a), which provide an
useful theoretical approach for understanding the admission
experience of the patients in our study. The explanatory
framework developed in this earlier work suggests patients
admitted as an emergency with sudden, severe illness or life
threatening injury were treated in a ‘spectacular’ fashion
8 Journal of Clinical Nursing
and efforts to prevent patient deaths on this trajectory nor-
mally occurred in the resuscitation area and involved the
multi-disciplinary health care team. However, those with
end-stage chronic or progressive illness, who were desig-
nated (by staff at triage and during repeat assessments) as
not requiring immediate active management, received care
consistent with the ‘subtacular’ trajectory, where their care
needs were deemed to be of a lower priority to those
patients on the spectacular trajectory and so they received
less attention from the ED staff and their supportive and
palliative care needs were not met (Bailey et al. 2011b).
This was also found in this study in that once the patients
had their initial acute, life-threatening condition stabilised,
their care was managed in a manner consistent with the ele-
ments of the subtacular trajectory and the ‘recovery phase’.
The subtacular trajectory was characterised by a lack of
attention to the continuing complex and long-term needs of
the patients. This confirms the utility of the trajectories for
making sense of complex patient experiences. This is not to
suggest a simplistic interpretation of the spectacular as good
and the subtacular as bad per se. Rather, it highlights that
the patients on the subtacular trajectory had care needs that
required co-ordinated care during their hospital stay and
subsequent discharge home (RCP & RCR 2012). In con-
trast, the spectacular has a more linear, algorithmic
approach with goals of care that are immediate, and focused
predominantly on treatment and cure (Bailey et al. 2011a).
This perhaps reflects a wider system issue in that the acute,
curative module, noted earlier, is less suited to the manage-
ment of people with long-term, life-limiting illnesses (Hewi-
son 2012). In a sense, the ‘spectacular’ and ‘subtacular’
dimensions of the patient experience uncovered in this study
are a microcosm of the challenges inherent in service provi-
sion for people with long-term conditions more generally.
Managing expectations
Patients’ negative perceptions about their care during the
subtacular phase contrasted starkly with their positive
experiences of the ‘emergency’ care they received earlier in
their admission. However, as a result of this, their expec-
tations of the level of care and attention they would
receive subsequently may have been raised. Managing
expectations of patients and their families with regard to
their care once the initial spectacular phase is complete is
important. If patients had been advised that as their care
needs changed, the amount of attention received would
reduce, it may not have been perceived so negatively. This
is not to suggest that their concerns be explained away,
rather it advocates that patients must be fully informed,
© 2016 John Wiley & Sons Ltd
Original article
involved and made aware of what to expect. There should
be no acceptance of poor care, such as the episodes
reported in some of the patients’ accounts, and routine
quality monitoring processes should be enforced to address
this if and when it occurs. However, the lower intensity
and gradual nature of care characteristic of the subtacular
trajectory may be appropriate, as long as the long-term
needs of the patient are addressed. If this is overlooked
and there is a lack of ‘emotional engagement’ with the
patient and family, institutionalised nondisclosure of
information adding to the uncertainties and complexities
patients are facing as the end of their life approaches can
occur (Costello 2001, Edmonds & Rogers 2003). The
findings indicate that hospital professionals did not
acknowledge the potential contribution of the ‘expert
patient’ or ‘expert carer’ in the subtacular trajectory. This
could have a negative impact on patients’ confidence if
they feel care is depersonalised and of poor quality
because the knowledge and insights of their carers are
not taken into account. Terminally ill cancer patients
have described their hospital experience as an ‘existence’
because it was inconsistent and not patient-centred (Spi-
chiger 2009). This was echoed in the patients’ accounts,
indicating their eagerness to return home because of con-
cerns about the lack of support to help meet their funda-
mental needs of toileting, hygiene and nutrition. If there
is trust in the caring relationship (Eriksson & Svedlund
2007) and staff practise with emotional intelligence (Bai-
ley et al. 2011c), then some of these difficulties may be
overcome. Clear communication about the likely trajec-
tory of care and its consequences is central to maintain-
ing trust in the caring relationship. Emotional intelligence
underpins the ability of staff to engage with patients and
their relatives at all stages of the admission (Bailey et al.
2011c). This needs to be combined with an understand-
ing of care trajectories if patients are to be fully engaged
in their care.
The poor quality of the care provided by some hospitals
in England has been criticised in a number of official
reports (Health Service Ombudsman 2011; National Advi-
sory Group on the Safety of Patients in England 2013; Care
Quality Commission 2014) and the wider media (The Tele-
graph 2012; BBC News 2013; The Guardian 2013). The
Francis Report (2013) highlighted failings in an English
hospital where patients were deprived of dignity and
compassion. In our study, staff members were aware of the
failings of the system in terms of poor communication and
continuity of care between hospital and community, rather
than the ‘content’ of care. This observation is not intended
as a criticism of staff. Instead, it highlights that dignity and
© 2016 John Wiley & Sons Ltd
Journal of Clinical Nursing
The EURECA study – hospital experience
compassion can be easily overlooked in a pressurised ‘acute
focussed’ health system.
NHS England has concluded that if EDs are to meet
increasing demand, emergency care needs to be restructured
(NHS England 2013). Until this study, the experiences of
patients with advanced lung cancer and COPD attending
the ED had received relatively little research attention.
Investigating patients’ experiences is essential to identify
ways to eliminate suboptimal care and inform any such
restructuring. Understanding this experience is seen as a
‘natural part of providing high-quality care’, and a good
experience is now seen as an important ‘outcome’ in its
own right (National Quality Board 2015, pp.9). The study
reveals how patients experienced hospital services following
emergency admission, an important time, when many were
at their most vulnerable and anxious, particularly those
who were near the end of life. Following their integrative
review, Robinson et al. (2014) concluded that the knowl-
edge of patient and family experiences of palliative care in
an acute hospital remains limited to discrete aspects of care.
Our study provides further evidence to address this research
gap, highlighting important implications for emergency hos-
pital admissions in the last year of life from the perspectives
of patients, family and healthcare professionals who experi-
ence it.
Limitations
Not all patients were able to participate in a second inter-
view (n = 11) following discharge either because they were
too unwell or they had died (median survival <2 months for
lung cancer patients). As a result, full details of the experi-
ence of this group of people in hospital between admission
and discharge may not be fully reflected in this paper.
This sample was drawn from people with lung cancer
and COPD only and it would be helpful if future research
explored the experiences of people with other life-limiting
and long-term conditions and the extent to which the tra-
jectories framework has explanatory utility in other care
settings. Also, it is important to acknowledge that this
study focuses on one cultural context and so caution is
needed in applying the findings directly to other settings.
Conclusion
The complex nature of illness for patients with advanced
respiratory disease makes emergency admissions to hospi-
tal likely. This research has generated findings that iden-
tify key issues in the organisation of hospital care that
need to be improved for patients with advanced lung dis-
9
C Bailey et al.

ease nearing the end of their lives. The study revealed
that patients and carers were satisfied with the initial
emergency care but had concerns about the care received
in the subsequent phase of admission once their present-
ing ‘emergency’ symptoms had been stabilised, regarding
it to be of poor quality. In this second phase, there was
lack of attention to the patients’ fundamental needs, lack
of involvement of the family as experts in the care of
patients, poor communication about care plans and a
lack of continuity between primary and secondary care.
The application of the ‘spectacular’ and ‘subtacular’ tra-
jectories is an effective way of highlighting the care needs
of patients with advanced respiratory disease who are
admitted as an emergency and how these change during
admission. Whilst patients were satisfied with their care
in the acute or spectacular phase of their admission, this
was not the case in the later subtactular phase of subse-
quent hospital care. This suggests that more attention
needs to be given to the continuing care needs of
patients. The organisation and delivery of care during the
subtacular phase of admission needs to take account of
the requirements of this group of patients.
with lung cancer and COPD following admission. Reveal-
ing how patients experience care, illustrating the patient
pathway, and explaining it using the trajectories of care dis-
cussed earlier, provides useful insights for practitioners, pol-
icy makers and educators. They can use them better to
manage patient needs. Reviewing the care of these groups
of patients in this way may enable the development of new
service provision which is more sensitive to their needs and
so will increase the quality of the patient experience.
Reviewing the care of these groups of patients in this way
may enable the development of new service provision,
which is more sensitive to their needs and increases the
quality of the patient experience.
Acknowledgements
The research team acknowledges the Macmillan Cancer
Support who funded this study, and together with Macmil-
lan acknowledge the support of the National Institute for
Health Research, through the National Cancer Research
Network.

Contributions
Relevance to clinical practice
Study Design: CB, EK, DM, SS; Data Collection and analy-
This study has direct implications for nursing practice and sis: CB, EK, DM, AH, SS; Manuscript preparation: CB,
the organisation of patient care. It is the first to explore the EK, DM, AH, SS.
patient experience of care at this time point and provides
insights on how hospital care can be improved for patients

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