| 66791 |
abstract |
Introduction
End of life care is high on policy and political agendas both in the UK (DH 2016)
and internationally (WHO/WPCA 2014), and in interdisciplinary academic and practice
debates globally (Higginson 2016). Healthcare policy over the last 10 years has consistently
highlighted deficiencies in the quality of end of life healthcare and identified a
range of strategies – across disciplines and settings – to improve the experience
of care for patients and their families (NP&EoLCP 2015).
Nurses are at the forefront of this care, caring for dying patients, ‘managing’ the
dead body, and dealing with the corporeal, emotional and relational dimensions of
death. Whilst nurses are ‘taught’ the theory and practice of end of life care, we
know little about their prior or early professional experiences of and reactions to
death, dying and the corpse and how these shape their understandings and influence
their practice.
Aims of review
Given the potential for early encounters to influence the subsequent delivery of end
of life care, we were interested to explore nurses’ early experiences of death, dying
and the dead body, to better understand these accounts and how they shape and influence
subsequent practice, and how all this might inform our teaching of death, dying and
last offices in the UK and internationally.
Methods
The review set out to map the existing literature and to identify gaps in research.
Arksey and O’Malley’s (2005) five stage approach to conducting a scoping review was
adopted which involved: identifying the research question; identifying relevant studies;
selecting studies; charting the data; collating, summarizing, and reporting the results.
Aims
The aim of this scoping review was to identify student nurses’ and registered nurses’
early encounters with death, dying and the corpse. The literature identified for inclusion
is heterogeneous and focuses on five main themes: different philosophies of care,
relationships, knowledge, impact of death and giving care.
Research question
The overarching research question was what are Registered Nurses’ and student nurses’
first encounters and on-going experiences of care of the imminently dying (that is,
in the last few hours and days of life) and the dead body. We were also interested
in the factors which might influence the provision of nursing care and organisational
factors such as mentoring and support, team working and professional relationships.
Identifying studies
To identify relevant studies in the nursing, psychological and medical literature
the following databases were searched: Medline, PubMed, PsychINFO and CINAHL. All
relevant articles were identified on a) nurses’ experiences of encountering and caring
for a dying person b) nurses’ and student nurses’ attitudes and provision of care
toward dying people and those who have died c) the influence of mentoring and support
within organisations (hospitals and hospices) and in the community (nursing and residential
homes) for nurses and student nurses.
The final 23 papers were independently assessed by two investigators
Nurses and nursing students’ attitudes to death
Nurses’ commitment to deliver such care depends on their own attitudes towards death,
dying and the dead body (Henoch et al. 2017) which can be established early in their
career (Parry 2011). Early experience, therefore – either before nursing or early
in training – is likely to influence the development of these attitudes to death,
dying and the dead, and these early encounters can have a lasting effect (Terry &
Carroll 2008; Anderson et al. 2015). There is some indication that students with prior
experience have more positive attitudes towards care of the dying (Gillan et al. 2013;
Henoch et al. 2017).
Death anxiety
Death and dying and post mortem care are major sources of stress for students (Osterland
et al. 2016), what Cooper and Barnett (2005) call ‘death anxiety’. Despite the complexity
of end of life care, student nurses (particularly in hospital settings) are often
the ones delivering such care (Cooper & Barnett 2005) further increasing this anxiety.
Young nursing students are unlikely to have encountered death and dying prior to commencing
training and confronting a dead body for the first time is a key stressor (Edo-Gual
et al. 2014). Although research on post-mortem care is limited (Swardt & Fouche 2017)
there is some evidence of the negative psychological impact of performing last offices
(Nyatanga & Vocht 2009). Concerns about the emotional impact of these first encounters
on the development of nurses’ future practice have prompted increased interest into
how students might best be prepared.
While the review identified several themes, the focus now is on student nurses and
nurses knowledge of care of the dying.
Knowledge: nurses
Although nurses consider palliative care to be a privilege and are committed to delivering
high quality end of life care (McDonnell et al, 2002; Johansson & Lindahl, 2012),
there is significant evidence that nurses’ knowledge of end of life care and palliative
care is poor (Andersson et al. 2016) and superficial (Watts 2014). A recurrent theme
across the studies was nurses feeling unprepared to deliver care at the end of life
(McDonnell et al, 2002; Anderson et al, 2015; Andersson et al, 2016; Heise & Gilpin,
2016). In Anderson et al’’s (2015) New Zealand study on the earliest memorable death,
the registered nurses they interviewed felt ill-prepared for their first encounter
with death and reported a lack of skills and knowledge about death and dying. They
were frustrated by this lack of knowledge and felt it influenced their ability to
deliver high quality end of life care.
Knowledge: students
Students are often the ones providing end of life care, particularly in hospital settings,
as they are at the frontline of care (Cooper & Barnett, 2005). They are therefore
particularly vulnerable ‘caught between doing the “best” for the patient within the
limitations of his/her role and knowledge’ (Cooper & Barnett, 2005, p.428). It is
therefore important that students are prepared and supported effectively, as their
prior experience of the death (of either a significant other or patient) can influence
their future attitudes towards the care of the dying (Arslan et al, 2014). In a Turkish
quantitative study of student’s attitudes (n=222) towards dying patients using the
Frommelt Attitudes Toward Care of the Dying (FATCOD) Scale, Arslan et al, (2014) found
that students with previous clinical experience of caring for the dying and those
who reported having a religious belief had more positive attitudes toward caring for
the dying patient. A similar finding was reported by Grubb and Arthur (2016) in their
UK FATCOD study of students’ (n=567) attitudes towards care of the dying. They reported
that ‘being at a later point in their course of study and having experience of death
and dying were independently associated with more positive attitudes’ (p.86).
Inadequacy and powerlessness
The students in Cooper and Barnett’s (2005) UK study of first year student nurses
reported feeling inadequate and powerless in dealing with the physical suffering of
patients, preparing to sever the relationship with the patient, not knowing what to
do or say and dealing with unexpected death. Other gaps in knowledge relate to clinical
skills such as symptom control (Irvin, 2000; Watts, 2014) and last offices (Edo-Gual
et al, 2014). As well as deficits in clinical skills, a key issue identified was lack
of knowledge of psychosocial skills and communication skills (McDonnell et al, 2002).
This lack of knowledge and skills is a key barrier to the delivery of high-quality
end of life care (McDonnell et al, p.2002).
So care of the dying in nurses and student nurses first or early encounters has a
number of consequences and nurses and student nurses are impacted by this aspect of
their work.
Impact of death
The studies indicated that death can have significant impact on nurses’ early and
subsequent encounters with death and dying (Cooper & Barnett, 2005; Edo-Gual et al,
2014). The memory of this first death can be so vivid that ‘participants appeared
to be re-living the encounter, complete with emotions they experienced at the time’
(Anderson et al, 2015, p.698). The impact can be worse when the patient is younger
(Espinosa et al. 2010) or when sudden (Heise & Gilpin, 2016) and if the patient has
been known for a long time (Espinosa et al. 2010) when relationships have become well
established.
Lasting effect
The negative impact of death on nurses can exert a lasting effect (Edo-Gual et al,
2014; Anderson et al, 2015) influencing future attitudes (Arslan et al, 2018) and
care (Charalambous & Kaite, 2013). This can include the fear of being present at future
deaths (Charalambous & Kaite, 2013) and of it happening on their shift (Hove et al,
2009), leading ultimately to what Cooper and Barnett (2005) call ‘death anxiety’.
There is evidence of nurses developing avoidance tactics (Anderson et al, 2015), expressing
an unwillingness to care for the dying patient (Arslan et al, 2014), finding other
nursing tasks to do (Irvin, 2000) or focussing on the physical tasks of end of life
care and not the emotional aspects (Anderson et al, 2015). Many of the papers drew
attention to the emotional impact of death on nurses including distress (Holms et
al, 2014; Heise & Gilpin, 2016), sickness and absence (Hov et al, 2009) and which
could ultimately result in ‘crusty nurses’ who are emotionally disengaged (Espinosa
et al, 2010).
Care of the dead body
In addition to the impact on nurses of the dying process itself, some of the studies
also highlighted the effects – both positive and negative – of nurses’ interactions
with the dead body. As well as being integral to providing high quality end of life
care, nurses also have an influential role in last offices (Cooper & Barnett, 2005)
and in what Quested & Rudge (2003) describe as transforming the patient into a corpse.
The studies discuss how caring does not stop when the patient is dead (Quested & Rudge,
2003), that it is a privilege to care for the dead body (McCallum & McConigley, 2013),
and the importance of maintain dignity and respect (Parry 2011). Many of the papers
discuss the impact of first seeing a dead body (Cooper & Barnett, 2005), how nurses
could remember the first time they saw the face of a dead body (Edo-Gual et al, 2014),
the way they were shocked by how the person looked when dead (Parry 2011), and the
rapid changes in the body following death (Johansson & Lindahl, 2012) including its
colour (Edo-Gual et al, 2014), in particular the colour of the lips and tongue (Anderson
et al, 2015). Several papers highlighted how nurses felt ill-prepared for last offices
in particular, packing orifices (Cooper & Barnett, 2005), wrapping the body and covering
the head and face (Parry 2011), and ‘closing the bag’ (Edo-Gual et al, 2014). In their
seminal examination of last office manuals, Quested and Rudge (2003) argue that nurses
‘enact the transition between life and death, and from person to corpse’ (p.553).
In their paper they discuss the devices used by nurses to manage this most ambiguous
and troubling boundary and how, in doing so, nurses segregate the living and the dying.
Education
Several of the included studies suggested ways in which death and dying education
could be enhanced and that educationalists ‘have a duty to explore other means of
support to enable students to cope more effectively’ (Cooper & Barnett, 2005, p.430).
The papers identified the need for a range of approaches to enhancing this ‘death
education’ (Anderson et al, 2015), including the use of simulation (Heise & Gilpin,
2016), drama (Parry, 2011), more effective integration of theory with clinical practice
(Cooper & Barnett, 2005; Andersson et al, 2016; Grubb & Arthur, 2016), better use
of reflection (Andersson et al, 2016) and opportunities for students to talk about
emotional aspects of death and dying (Costello 2004; Arslan et al, 2014). Others highlighted
the importance of positive role models and mentorship (Charalambous & Kaite, 2013;
Andersson et al, 2016) and clinical supervision (Irvin, 2000).
Education and training
Education, both pre- and post-registration, is therefore a key aspect of influencing
students’ attitudes towards end of life (Gillan et al. 2014a) and to promoting consistent
high-quality care (DH 2016). However, the literature cites poor education as a major
issue (Parry 2011; Gillan et al. 2014a). Newly qualified nurses report feeling ill
prepared (Anderson et al. 2015; Ferguson 2017), with communication and not knowing
what to say to patients and their families (Osterland et al. 2016) identified as particular
concerns. In addition to concerns about the quality of education, students worry that
they may not gain experience of death and dying until after qualification, when they
may well be in positions of leadership and in charge of a shift.
Teaching end of life care
There is therefore a developing literature on the use of different methods to teach
end of life care (in both theory and practice). These methods range from ‘real life’
simulation techniques (Gillan et al. 2013 & 2014b; McGarvey et al. 2015; Ferguson
2017), cinemeducation (Gillan et al. 2013), to the use of cadavers in anatomy classes
(McGarvey et al. 2015). The purpose of this ‘death education’ (Anderson et al. 2015)
is to create opportunities for students to experience death in a ‘stress free environment
rather than encounter death for the first time in a hospital setting in the presence
of relatives’ (McGarvey et al. 2015:249) with the intention that this will enhance
preparation and reduce fear (Osterland et al. 2016).
Mentorship and support
Additionally, the extent to which student nurses and more experienced nurses felt
able provide an appropriate atmosphere and support patients and families, was influenced
on the support they received from colleagues, mentors, good role models, or through
clinical supervision. Several studies demonstrated that these support mechanisms were
lacking and therefore students and registered nurses felt isolated and unable to support
other staff (Irvin, 2000; McDonnell et al, 2002; Holms et al, 2014). Nurses reported
feeling particularly vulnerable if their senior colleagues did not understand the
emotional impact of the death of a patient (Anderson et al, 2015). In contrast, other
studies indicated that when nurses were part of a team and were able to discuss a
patient’s death this was valued and enhanced their ability to cope (Costello, 2004;
Espinosa et al, 2010; Anderson et al, 2015; Andersson et al, 2016).
Mentorship in practice (Terry & Carroll 2008; Osterland et al. 2016) and positive
role modelling (Anderson et al. 2015) are also crucial to supporting students’ learning
in practice.
Discussion
While several studies found that some nurses felt privileged to be providing care
for dying patients, their knowledge of end of life and palliative care was lacking,
which was the third theme highlighted by the review. Studies suggested there was a
dearth of education and training and, consequently, nurses felt unprepared to deliver
optimal care to dying patients (Irvin, 2000; Hov et al, 2009).
The review purposefully did not focus on the educational literature about death and
dying. However, many of the included studies made some recommendations regarding education
and training. Several suggested that to best prepare students and registered nurses
for work with the dying, education should focus on recognising the signs of imminent
death, emotional preparation and how to break bad news (Mc Donnell et al, 2002; Costello,
2004; Espinosa et al, 2010). Papers also suggested reflection practices, positive
role models and mentors could aid nurses’ preparation for end of life care (Charalambous
& Kaite, 2013; Andersson et al, 2016) and thereby mitigate the impact of death on
nurses. However, although these studies suggest such training can reduce ‘death anxiety’,
there is a lack of empirical research demonstrating the effectiveness of such education
and training (Watts, 2014).
Conclusion
The scoping review identified that student nurses and experienced nursing staff are
impacted both positively and negatively by early encounters with the dying and dead
body. Where staff felt supported, this helped to shape a more positive attitude to
this type of work which in turn led to the provision of high-quality care in places
of dying described as being conducive to a peaceful or calm setting. Conversely, where
much of this didn’t’ take place, student nurses and more experienced staff had ‘death
anxiety’ and so attempted to avoid such situations, or suffered emotional contagion,
distress and even burn out. This strongly suggests that educationalists and senior
nursing managers must recognise that all staff involved in care of the dying need
to be fully informed, communicated with and supported to prepare their selves, the
patient and their families of imminent death.
Recommendations and relevance to clinical practice
The findings of this scoping review can inform health care organisations, senior nursing
managers and mentors on different wards and in a variety of setting including hospitals,
the community, hospices and care homes. The review can also be highly relevant to
inform the student nursing curriculum, post -registration professional development
as well as individual health professionals. The findings provide the basis by which
to examine and explore nursing practice at such a critical time and how early encounters
shape attitudes and subsequent care of the dying. In addition, the findings can deepen
understanding of the impact of care of the dying and dead body as well as supporting
families from the perspective of other health professionals and nursing undergraduates.
At organisational levels, the findings can be utilised for developing high-quality
mentorship and supervision and promote open communication of the challenges of this
aspect of nursing and ways of overcoming difficult end-of-life situations. |