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Jones, Kerry and Draper, Jan
(2019).
URL: http://www.deathandsociety.org/pages/ddd14-confere...
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.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)
