Professional Documents
Culture Documents
Aim
The aim of this literature review was to explore
Abstract and analyse the current literature in relation to
Approximately 90% of the UK population spend some time in
the experiences of general (adult-trained) nurses
hospital in their final year of life, and more than half of the population
providing end-of-life care to patients in the acute
die in hospital. This review aims to explore the experiences of general
hospital setting. The definition of ‘end-of-life
nurses when providing end-of-life care to patients in the acute
care’ presented by Watson et al (2009, xxvii) in
hospital setting. Nine studies were identified through a literature
the Oxford Handbook of Palliative Care was
search, and each was then analysed and evaluated until themes
chosen to direct this review:
emerged. Six themes were drawn from the literature: lack of
education and knowledge, lack of time with patients, barriers arising
‘... referring to the care of a person during the last
in the culture of the health-care setting, communication barriers,
part of their life [when] it has become clear that
symptom management, and nurses’ personal issues. The themes cause
the person is in a progressive state of decline.’
concern about the quality of end-of-life care being provided in the
acute care setting. The literature appears to be consistent in the view
that terminally ill patients are best cared for in specialised care
Review methodology
Literature search
settings, such as palliative care units and hospices. However, increasing
The purpose of a literature review is to evaluate
demands on health services will result in greater numbers of dying
the current theoretical and scientific knowledge
patients being admitted to the acute hospital setting. It is therefore
surrounding a particular issue, resulting in a
paramount that general nurses’ educational needs are met to ensure
synthesis of what is known and what remains
they develop clinical competence to provide high-quality holistic
unknown (Burns and Grove, 2007). It also
end-of-life care.
involves a systematic and critical appraisal of the
Key words: Acute hospital setting l Palliative care l Nurses’
most important and relevant literature on a topic
experiences l End-of-life care
(LoBiondo-Wood and Haber, 2010). A time frame
of 2000–12 was decided to ensure that only rele-
vant and up-to-date research would be included in
I
n the UK, it is estimated that 90% of the the review. The following databases were searched
population spend time in hospital in their using terms developed from background reading:
final year of life, and more than half of the CINHAL Plus, MEDLINE, Embase, and Web of
population die in hospital (National End of Life Science. Table 1 provides a summary of the search
Care Programme, 2010). While exploring chang- results using different key terms. Cross-referencing
ing time trends in relation to place of death in and searching for government publications were
Roisin McCourt is
England, Gao et al (2013) found that hospital conducted to obtain further articles pertaining to
Staff Nurse, Royal was the commonest place of death, with 48% of nurses’ experiences of end-of-life care in acute
Berkshire Hospital,
England; John James
people with cancer dying in hospital, 24.5% hospitals. None of the publications found by these
Power is Lecturer, dying at home, and 16.4% dying in hospices means were included in the review, but they were
Queen’s University used to provide further information and support.
Belfast; Marie Glackin
from 1999 to 2010. It is therefore evident that all
is Lecturer, School of nursing staff will be involved with end-of-life
Nursing and Midwifery,
care at some stage in their career, regardless of Inclusion and exclusion criteria
© 2013 MA Healthcare Ltd
Queen’s University
Belfast, 97 Lisburn their specialty or level of training. Research Strict inclusion and exclusion criteria enabled
Road, Belfast, BT9 7BL, conducted by McCaughan and Parahoo (2000),
Northern Ireland
more precision and a greater focus on the search
however, suggests that nurses at ward level have topic when determining which papers to include.
Correspondence to: a substantial lack of knowledge in relation to
Marie Glackin
The criteria were determined by initial wider
m.glackin@qub.ac.uk palliative care and end-of-life issues. reading on this topic.
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Review
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Review
suggested that this could be the explanation for of the Liverpool Care Pathway for the Dying
11% of these patients dying alone in the acute Patient (LCP). Each experience increased their
hospital setting. confidence and gave them the strength to accept
By contrast, Wallerstedt and Andershed new challenges. The nurses in this study held the
(2007) noted that each encounter when caring LCP in high regard, as they had experienced a
for a dying patient gave nurses invaluable expe- shift in care from routine to patient-centred
© 2013 MA Healthcare Ltd
rience and knowledge that would benefit them once the framework was introduced. This study
in their future career. In the study by Jack et al must be viewed in the context of the recent
(2003), nurses stated that their knowledge of review of the LCP led by Baroness Neuberger
symptom control and their confidence in provid- (Department of Health, 2013a), who in her
ing this care improved after the implementation summary stated that:
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Review
‘We have recommended phasing out the LCP for and prioritised single room allocation to ❛Spending
and replacing it with a more personalised and dying patients, but that this need competed with time with
clinically sensitive approach.’ (p2) the need for ‘isolation’ for infectious patients. family and
In their Swedish study, Walllerstedt and
Lack of time with patients Andershed (2007) found that nurses also felt they
friends and
The busyness of the acute setting was reported as encountered many difficulties when trying to not being
being a major barrier to patient care in many of combine care of the dying patient with curative alone are
the research studies reviewed (Hopkinson et al, treatment for patients in the same unit. They also considered
2003; Sasahara et al, 2003; Thompson et al, expressed the view that some of these barriers
2006; Wallerstedt and Andershed, 2007; O’Hara, were related to a lack of time due to the demands
very important
2011). This barrier was also reported in Florin et from the acute setting: goals for
al (2004), by both nurses and patients. Spending people
time with family and friends and not being alone ‘... they [the patients] see you don’t have time approaching
are considered very important goals for people .... On a hectic day with a lot of patients in and
approaching the end of life (Vig and Pearlman, out, and then it’s the cancer patients and
the end
2003). Research suggests that successfully achiev- palliative patients that have to give way, of life ...❜
ing this goal can enhance the quality of the dying unfortunately that’s how it is.’ (p37)
experience for terminally ill patients (Patrick
et al, 2001), and in the hospice model of care Nurses who participated in the Spanish study by
spending time talking with patients is considered Mahtani-Chugani et al (2010) described how the
a major priority of nursing care (Hospice care that they provide is directly focused on the
Friendly Hospitals, 2012). Curtis et al (2002) disease or the damaged organ, i.e. not holistic.
outlined health professionals’ responsibility to These findings present the stark reality of terminal
spend time with terminally ill patients and their care in the acute hospital setting. This study used
families, offering reassurance and alleviating focus groups, and Litosseliti (2010) suggested that
fears and anxieties. focus groups are limited in their use as they often
report a consensus of opinions rather than the
Barriers arising in the culture of the actual lived experience of the participants.
health-care setting Encouragingly, many of the nurses in the
Care of the dying patient vs care of the curative Canadian study (Thompson et al, 2006) agreed
patient was another theme that emerged from the that once they could facilitate the ‘lane change’
majority of the reviewed studies. The nurses they could establish a care plan that would reflect
interviewed by Thompson et al (2006) expressed the patient’s needs. They also stated that this
concerns that trying to facilitate the ‘lane change’ process was often facilitated when patients and
from acute to palliative care was a major barrier families had a clear understanding of the disease
that negatively affected end-of-life care in their pathology and outcomes and could actively
acute setting. Nurses in the Hopkinson et al participate in decision-making processes.
(2003) study described their experiences of
end-of-life care in a very negative light. They felt Inappropriate use of active treatment
that any time spent with dying patients was Another theme was referred to as the inappropriate
continually shadowed by the reality of the needs use of active treatments on patients nearing the
of other patients under their care. end of life. In the quantitative Japanese study,
The physical surroundings of the acute ward, approximately 70% of the nurses agreed that
such as the lack of private rooms and the ‘drab they were inappropriately and actively treating
décor’, was another area that nurses described as terminally ill patients (Sasahara et al, 2003). In
negatively affecting care (Thompson et al, 2006). this instance, the terms ‘inappropriate’ and ‘active
These findings were consistent with those in treatment’ were used to describe unnecessary
Sasahara et al (2003), as identified by nurses procedures such as intravenous therapy,
working in Japanese hospitals. Over 70% of the venepuncture, and other invasive procedures.
nurses who participated in this quantitative study These findings were also supported by Toscani
agreed that there were a lack of private rooms et al (2005), whose results using a descriptive
for the families of dying patients. The Australian approach showed that many patients continued
© 2013 MA Healthcare Ltd
study (Bloomer et al, 2013) typically found that to be exposed to invasive treatments and specific
care in a single room is favoured by patients and therapies (blood transfusions, intravenous fluids)
clinicians, and is justified for the increased pri- despite death being imminent. There are
vacy and quietness that it provides. Bloomer et al disadvantages to using a descriptive approach,
(2013) reported that nurses had openly lobbied however, in that the researchers tend not to
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Review
❛... the ability analyse their data in any ‘interpretative depth’ adequate pain and symptom management was
of a nurse to (Polit and Beck, 2010). considered the most important. Similar findings
communicate The unsuitability of the acute health-care emerged from another supportive study carried
setting for terminally ill patients is demonstrated out by Steinhauser et al (2000), where over 70%
therapeutically by the statistic that 11% of patients died alone of participants (patients, families, and care
is a critical across acute hospital settings in Italy (Toscani providers) considered pain and symptom
factor in how et al, 2003). This was attributed to the busyness management to be one of the most important
patients of the acute wards and the nurses not having aspects of end-of-life care.
time to spend with dying patients owing to the By contrast, the nurses interviewed by O’Hara
perceive their demands from other acutely ill patients. The (2011) spoke positively when asked about
illness ...❜ nurses interviewed by Hopkinson et al (2003) in symptom management while using the LCP. The
the UK also witnessed the inappropriate use of nurses all agreed that there had been a vast
active treatments on many occasions. improvement in pain and symptom management
as a result of implementation of the framework.
Communication barriers These opinions were also evident in the findings
Nine of the reviewed studies (Hopkinson et al, presented by Jack et al (2003).
2003; Jack et al, 2003; Sasahara et al, 2003;
de Araújo et al, 2004; Toscani et al, 2005; Nurses’ personal issues
Wallerstedt and Andershed, 2007; Mahtani- The majority of the reviewed papers reported
Chugani et al, 2010; O’Hara, 2011; Bloomer themes relating to the personal issues and feelings
et al, 2013) yielded findings in relation to barriers of the nurses involved. These issues included:
to effective communication in the acute hospital ●●A sense of inadequacy in the provision of
setting, particularly reflecting inadequacies in the effective and quality end-of-life care in acute
approach to communication in the palliative care hospital settings
context. The wider literature suggests that the ●●The stress and fatigue resulting from dealing
ability of a nurse to communicate therapeutically intensively with dying patients
is a critical factor in how patients perceive their ●●Lack of support with regards to providing
illness (Funnell et al, 2008). This is particularly effective palliative care from ward managers
important for nurses providing end-of-life care to and also at an organisational and structural
patients, as communication is seen as the corner- level within health care
stone of such care (Ferrell and Coyle, 2010). ●●A sense of being alone and not being able to
seek support from others
Symptom management ●●Tension or dissidence arising between the quality
Symptom management was a strong theme in of care they knew they should be delivering
much of the reviewed literature (Hopkinson et al, and what they could actually deliver in practice
2003; Jack et al, 2003, Toscani et al, 2005; ●●A sense of incompetence and impotence when
Thompson et al, 2006; O’Hara, 2011). The find- managing significant numbers of dying patients.
ings presented by Toscani et al (2005) revealed a It was evident from some of the studies that
worrying lack of concern about pain and symptom being comfortable with death and dying is an
control in Italian hospitals, consistent with the essential element of providing high-quality care
findings of the SUPPORT study (SUPPORT and minimising stress and burnout (Thompson
Principal Investigators, 1995) in the USA, where et al, 2006). Jack et al (2003) also suggested that
perhaps more than half of dying patients received the implementation of the LCP brought major
inadequate pain control at the end of life. Other benefits, with nurses describing a greatly enhanced
inadequately addressed symptoms included nausea quality of care and improved overall experience in
and vomiting. providing end-of-life care in acute settings.
Symptom management is seen as one of the Stress in the workplace can have many adverse
most important aspects of end-of-life care. In effects on nurses’ physical and mental health and
particular, pain is believed to be one of the most their role and work (Bourbonnais et al, 1999; de
feared symptoms in patients with a terminal Lange et al, 2004; Hall, 2004). Mojoyinola
illness, and unalleviated pain continues to be a (2008) concluded that stress among nurses often
concern for terminally ill patients worldwide manifests as physical symptoms, such as back
© 2013 MA Healthcare Ltd
(Smeltzer et al, 2008). In a supportive study by pain, headache, and high blood pressure. These
Singer et al (1999), the researchers explored findings imply that nurses’ physical and mental
patients’ experiences of and opinions on the health are both adversely affected by stress.
quality of end-of-life care they were receiving. These findings are consistent with those of Weigel
The patients identified five domains, of which et al (2007), who found high levels of apprehension
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 26, 2015. For personal use only. No other uses without permission. . All rights r
Review
associated with ‘hospital’ nurses caring for dying ●●Nurses in the acute hospital setting should be ❛Stress in the
patients. Bloomer et al (2013, p762), in their educated regarding end-of-life care based on workplace can
reviewed Australian paper, commented that the recommendations from the review of the have many
following their observational study: LCP (Department of Health, 2013b).
●●Appropriate training is required to facilitate
adverse effects
‘What appeared as frantic activity in the hours the change from curative acute care to holistic on nurses’
or minutes before a patient’s death is more end-of-life and palliative care. Similarly, man- physical and
likely a representation of death anxiety, denial agement structures in the health service should mental health
and withdrawal, where nurses focus on care be made aware of their role in and responsibility
tasks and disengage as a way of coping.’ for providing adequate support for nurses.
and their role
and work ...❜
Summary of findings Conclusion
It is evident from the analytical themes that there The reviewed papers, although few in number,
are many issues in relation to general nurses have presented various themes that are negatively
caring for terminally ill patients in the acute affecting the provision of end-of-life care in the
hospital setting. In seven of the nine reviewed acute hospital setting. Caring for terminally ill
studies the nurses reported a lack of education patients is an area that general nurses in the
and knowledge as being a significant obstacle in acute setting find particularly difficult. Dealing
the provision of comprehensive, holistic end-of- with the emotional responses of patients and
life care to patients and their families. These families and their own emotions is something
obstacles were worsened by barriers to effective nurses find stressful, frustrating, and upsetting.
communication that existed between nurses, These difficulties are further compounded by
patients, and their relatives. The management of time constraints, lack of experience and educa-
symptoms such as pain, nausea, vomiting, and tion, communication issues, and poor symptom
dyspnoea was reported as a source of stress and management. Through advanced education,
anxiety for general nurses working in the acute training, and support for general nurses, many of
hospital setting. The emotional nature of caring these barriers could be overcome.
for terminally ill patients, a perceived lack of Many nurses and health professionals think
knowledge regarding symptom management, the terminally ill patients would be better cared for
environment of the acute setting, and the perceived in a specialist setting, such as palliative care units
lack of time due to the demands from acutely ill or hospices. The current state of health services
patients were acknowledged as problematic for and the projected increase in chronic and malig-
general nurses in five of the reviewed studies. nant diseases, however, suggest that this ideal
solution is a long way from fruition. With more
Implications for practice than half of people in the UK dying in the acute
This literature review gives the reader a view of hospital setting (National End of Life Care
the provision of end-of-life care as described by Programme, 2010), more effective provision of
general nurses across the world. The following end-of-life care in this setting must be sought. I●
JPN
are recommendations drawn from this review:
Declaration of interests
●●The culture of the care setting should be This study had no external sources of funding. The authors
addressed and modifications made to meet the have no conflicts of interest to declare.
individual needs of the patient instead of the
culture of the care setting dictating the Bloomer MJ, Endacott R, O’Connor M, Cross W (2013)
provision of care The ‘dis-ease’ of dying: challenges in nursing care of the
●●Improving education on the palliative dying in the acute hospital setting. A qualitative observa-
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students and continue in the clinical health- evolution of mental health among nurses. J Occup Health
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minimal interventions in relation to education Saunders Elsevier, Philadelphia
and training can greatly improve the quality of Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C,
Byock I (2002) A measure of the quality of dying and
care in the acute hospital setting
© 2013 MA Healthcare Ltd
onal Journal of Palliative Nursing. Downloaded from magonlinelibrary.com by 138.253.100.121 on November 26, 2015. For personal use only. No other uses without permission. . All rights r
Review
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If you would like to be considered for the peer review panel, please send a brief CV and details
of your particular areas of expertise or interest to the Editor, Craig Nicholson:
craig.nicholson@markallengroup.com
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