The National Palliative and End of Life Care Partnership (NPELCP) stated that end-of-life care is required by the vast majority of people, therefore the care provided to both dying patients and those closest to them must be a priority and of the highest quality possible (NPELCP, 2015). To achieve this necessitates continuous improvements to the way health professionals plan, approach and prepare people for death (NPELCP, 2015). The Public Health England (PHE) End of Life Care Profiles' data for 2016 stated that the largest proportion (46.9%) of all deaths involving the provision of end-of-life care in England occurred in acute hospital settings (PHE, 2018). Such a figure suggests that caring for dying patients is both a prominent and essential component of hospital-based nursing (Abu-Ghori et al, 2016; Andersson et al, 2016). However, although nurses are required to advocate for patients and support end-of-life care decisions as part of their professional role (Thacker, 2008; Department of Health (DH), 2016), the majority of nurses do not work in specialist hospice settings or possess specialist skills in end-of-life care (Hayes et al, 2014).
A significant number of hospital deaths occur in critical care departments (Cook and Rocker, 2014; Royal College of Physicians, 2016). Critical care encompasses specialist intensive care units (ICUs) to which patients are ordinarily admitted due to life-threatening conditions. The primary goal of ICU nursing therefore is to provide curative care and to save life, thus avoiding death and the requirement for end-of-life care (Fridh et al, 2009; Tirgari et al, 2016). Although ICUs are designed to care for acutely ill patients, they are not considered to be ideal spaces for dying patients (Angus and Truog, 2016). However, recently provided statistics by the Intensive Care National Audit and Research Centre (2017) show that in the period 2015 to 2016, 14.1% of all patients admitted to ICUs in the UK received end-of-life care. This indicates that end-of-life care inevitably plays a role in daily ICU-based practice (Velarde-Garcia et al, 2016) and thus presents non-end-of-life-care specialist nurses with particular challenges. This is due, in part, to the majority of ICU nurses not receiving formal training in this aspect of care (Noome et al, 2016), which raises questions regarding their levels of knowledge and competency (Tirgari et al, 2016).
The precise end-of-life care role within ICU is not clear (Noome et al, 2016) and ICU nurses' perceptions of what constitutes both good practice and a ‘good death’ (DH, 2008) are largely unrepresented in the literature (Terkamo-Moisio et al, 2016). Therefore, the aim of this literature review was to explore current evidence surrounding the challenges experienced by ICU nurses when providing end-of-life care. It is hoped that, by understanding such phenomena, any suggested improvements for end-of-life care provision may be identified.
It is recognised that providing end-of-life care is both an integral and ethical obligation of nurses (Stefanou and Faircloth, 2010; Stilos et al, 2016). This care essentially involves enabling patients to experience the type of death that the patients themselves would choose, by focusing on patient-centred holistic care (DH, 2008). The National Institute for Health and Care Excellence (NICE) (2017a) quality standard for end-of-life care suggested that the delivery of high-quality care can enhance quality of life by ensuring that patients experience positive health care in a safe environment.
The DH's (2008)End of Life Care Strategy states that ‘although every individual may have a different idea about what would, for them, constitute a ‘good death’, for many this would involve:
In relation to ICUs, the aforementioned ‘good death’ could be defined as when a patient is calm, in a private room and in the company of relatives (Fridh et al, 2009).
This article uses the definition of end-of-life care provided by the Leadership Alliance for the Care of Dying People (LACDP) (2014) and the end-of-life care for adults guidelines provided by NICE (2017a). These define end-of-life care as relating to patients for whom death is considered to be imminent within hours or days (LACDP, 2014) due to advanced, progressive and life-threatening incurable conditions. This clarification aims to differentiate end-of-life care from the palliative care that is required when a person has a life-threatening illness but death is not imminent.
Methodology and methods
A comprehensive literature search was conducted between March and July 2018. Key words and synonyms (end of life care, terminal care, nurses, challenges, delivering, provision, quality care, acute care settings, intensive care) were formulated and entered into relevant database search engines (British Nursing Index, EBSCOhost/Psychology and Behavioural Science, Internurse, Ovid/Medline and Wiley Online) to source peer-reviewed qualitative studies of a primary research nature. Examining qualitative works based on real-life experience (Silverman, 2015) allowed for effective data collection that provided an in-depth picture of what are often complex phenomena (Vaismoradi et al, 2016; Polit and Beck, 2018). Studies using phenomenology as a research method provide first-hand accounts of end-of-life-care experiences and the challenges faced by ICU nurses (Holliday, 2016). To gain in-depth understanding of a certain group's experience, seeking out that particular group is essential (Greenhalgh, 2014). A physical search of stored journals was also undertaken in the author's university library, which proved to be productive; however, this approach was time consuming and a limiting factor in terms of the number of journals available.
Strict inclusion/exclusion criteria were adopted (Table 1). Critical appraisal was applied using the Caldwell et al (2011) framework to ensure the context in which data were provided was considered to be authentic and trustworthy (Bettany-Saltikov, 2012). Continuous identification and the acceptance or rejection of studies soon allowed for deeper analysis and the grouping of studies by identifying patterns of data and relationships between texts (Booth et al, 2012). As analysis progressed, a grounded-theory approach was applied, the purpose being to generate theory from within the found data by using the concepts of constant comparison, theoretical sampling and theoretical saturation (Williamson and Whittaker, 2017). By using this grounded-theory approach, the researcher can pursue a trust in emergence, ensuring that all information retrieved reflects what lies in the data itself and is not tainted by any preconceived ideas or opinions, as discussed by Glaser (1978) (Parahoo, 2014: 232).
| Inclusion | Exclusion |
|---|---|
| End-of-life care | Palliative care |
| General staff nurses | Specialist end-of-life-care-trained nurses |
| Intensive care units | Other acute/hospice/home settings |
| Qualitative—interviews/discussion | Quantitative—statistical data |
| Geographical reach—worldwide | Exclusively UK-based studies |
| English language/translated | Non-English language/translated |
The search outcomes are presented in Table 2 to illustrate the number of studies found within each database and physical search, with the process of exclusion applied to extract the final six chosen studies. The six studies were subjected to rigorous thematic analysis, depicted in Table 3, to help identify common characteristics and to report recurring themes, patterns and the conclusions found (Braun and Clarke, 2006; Gale et al, 2013).
| Databases and search tools used for data collection | Search results: number of initial articles found | Advanced search results with inclusion and exclusion criteria applied | Retained number of articles chosen for literature review |
|---|---|---|---|
| British Nursing Index | 1408 | 19 | 2 |
| EBSCO Host | 731 | 8 | 0 |
| Internurse | 2089 | 13 | 2 |
| Ovid Medline | 10014 | 11 | 0 |
| Wiley Online | 9752 | 12 | 1 |
| Physical search of stored journals | 3 | 3 | 1 |
| Study | Country of origin | Study design/methodology | Sample size | Aim | Summary of findings |
|---|---|---|---|---|---|
| Fridh et al (2009) | Sweden | Qualitative—interviews | 9 | To explore nurses' experiences and perceptions of caring for dying patients in intensive care units (ICUs) | The term ‘doing one's utmost’ is used to describe how nurses endeavour to provide dignified end-of-life care, promoting relationships with relatives and assisting unaccompanied patients |
| Efstathiou and Walker (2014) | UK | Qualitative—interviews | 13 | To explore the experiences of ICU nurses who had provided end-of-life care to patients and families after the withdrawal of treatment | The essence of doing the best to facilitate a dignified death, signified by four themes: caring for patients and families, encouraging family presence, reconnecting patient and family, dealing with emotions and ambiguity |
| Holms et al (2014) | UK | Qualitative—interviews | 5 | To explore the experiences of ICU nurses who had provided end-of-life care to patients and families | ICU nurses feel unprepared to provide proficient end-of-life care based on five themes: integrated care systems, communication, the ICU environment, staff training and staff distress |
| Paganini and Bousso (2015) | Brazil | Qualitative—interviews | 14 | To understand ICU nurses' autonomy in making end-of-life care decisions | Nurses experience the need to exercise autonomy in ICU. However, the complexity of end-of-life care requires a proactive attitude to ensure they become part of the decision-making process |
| Kisorio and Langley (2016) | South Africa | Qualitative—focus group | 24 | To explore ICU nurses' experiences of end-of-life care | Support for dying patients and their families needs to be coupled with support for nurses, discussed via five themes: the difficulties experienced, discussion and decision making, patient support, family support and nursing support |
| Noome et al (2016) | Netherlands | Qualitative—interviews | 20 | To determine improvements in end-of-life care by understanding ICU nurses' experiences and the way they would like to provide end-of-life care | ICU nurses consider end-of-life care to be performed reasonably well; however, optimal care requires: nursing input in decision-making, sufficient end-of-life care knowledge, a checklist for end-of-life care nursing activities, adequate time to care for the patient and the family |
Findings
Six studies by Fridh et al (2009), Efstathiou and Walker (2014), Holms et al (2014), Paganini and Bousso (2015), Kisorio and Langley (2016) and Noome et al (2016) all presented notable and contemporary insight into the experiences of ICU nurses caring for patients at the end of life. Four significant themes emerged:
A lack of nursing involvement in end-of-life care decision-making
A theme present in all six studies was that the nurses felt they had a lack of involvement in decision-making in end-of-life care. For example, Paganini and Bousso (2015) considered the importance of multidisciplinary team (MDT) discussions. The 14 participants in this study spoke of feeling frustrated with having a lack of power to perform the care they felt necessary when all decisions regarding their patients' treatment was made solely by doctors. Kisorio and Langley (2016) described how nurses felt distanced from the decision-making process but wished to be ‘on the same page’ to understand certain decisions made by doctors. This was because, as nurses spend the majority of their time with patients, they felt they should be part of the team that discusses the plan of care, in order for them to explicitly advocate for their patients. Although some nurses wanted to be more engaged in decision-making in end-of-life care, the same study also revealed that others did not see this as an essential part of their role (Kisorio and Langley, 2016). There was an acceptance that decisions on patient care in ICUs generally come from doctors who may be perceived as having superior knowledge in this area. These findings are consistent with those of Fridh et al (2009). The nurses they interviewed described how they felt that a lack of MDT collaboration between professionals in the decision-making process left them feeling excluded.
A lack of knowledge in providing end-of-life care
A lack of professional knowledge on how best to deliver end-of-life care was a key theme in the literature. Insufficient support and training were highlighted by Kisorio and Langley (2016) as being problematic when attempting to deliver ideal levels of end-of-life care, with senior nurses reporting that the majority of nurses do not have substantial experience in this area. Noome et al (2016) found that all 20 ICU nurses they interviewed believed education was needed to understand the end-of-life care process, adding that education relating to the expectations of different cultures and religions would also help them to provide improved end-of-life care. Nineteen of the 20 nurses also supported the need for the introduction of a specific guideline to help them know whether ‘everything had been taken care of’ and also help to support less experienced nurses to clarify the nursing actions required. This is similar to the findings of Fridh et al (2009) and Holms et al (2014) who found that the nurses they interviewed had received very little education or training in end-of-life care, suggesting that any skills that could be applied were effectively learnt over time by dealing with dying patients and by observing more experienced members of staff. Participants in the Holms et al (2014) study felt that they were generally expected to be able to confidently deal with the challenges of end-of-life care, although their ICU training rarely covered this subject but instead focused predominantly on life-sustaining treatment.
The dilemma of prioritising care between the patient and family
When discussing the decision to end life-sustaining treatment and begin end-of-life care, a theme arose from several studies that explored the dilemma of how and when to prioritise care for both the patient and the patient's relatives. Nurses expressed the belief that the overriding priority for care delivery was focused on the patient, which predominantly involved personal care and symptom management aimed at helping the patient achieve a comfortable and dignified death (Fridh et al, 2009; Efstathiou and Walker, 2014; Paganini and Bousso, 2015; Noome et al, 2016).
The study by Fridh et al (2009) explored the perceptions of experienced ICU nurses. They only felt able to divert their attention towards comforting and supporting relatives once they were assured that the patient was comfortable. Efstathiou and Walker (2014) and Noome et al (2016) found that, although patient care was of primary concern to the nurses in their studies, the importance of caring for the family by listening and providing information and reassurance was seen to be of equal importance. Yet there was still a distinct lack of clarity given to their role in terms of standardised practice and whether the emphasis of care should be with the patient or be redirected towards the family. The term ‘mastery of care’ (Paganini and Bousso, 2015) attempts to address this challenge and is used to describe how nurses are required to acknowledge and balance the expectations of patients, families and the MDT while also fulfilling policy and statutory requirements, the aim being to create a healthy equilibrium of care provision.
The nature of providing end-of-life care within the ICU environment
The practicalities of providing quality end-of-life care within complex ICU environments was a recurrent theme within the literature. A fast-paced ICU was said to create emotional challenges for nurses in respect of the severity of patients' conditions and the continual high demand for ICU beds (Kisorio and Langley, 2016). Nurses from the Kisorio and Langley (2016) study said that not having adequate time to adjust after a patient death was particularly disturbing. Nurses were expected to admit and care for new patients almost immediately ‘as if nothing had happened’, despite the fact that watching a patient die can often be a distressing experience. They admitted to not being able to focus clearly on new patients if they were not given the appropriate time and space to adjust.
The Holms et al (2014) study raised problems such as a lack of single rooms to provide adequate privacy for patients and families at the end of life. However, it also found that nurses considered that ICU offered one particular advantage over general wards for dying patients—that of higher nurse–patient ratios, allowing for more time to be spent with dying patients.
The study by Fridh et al (2009), involving nine participants, suggested that a lack of private rooms created a clear obstacle to providing dignified, and thus high-quality end-of-life care. This particular subject was raised as a matter of concern in all the research studies.
The predominant finding from the studies was that the nurses believed that an ICU was not an appropriate place to support peaceful end-of-life care owing to the often busy, sometimes noisy and overall high-pressure environment (Fridh et al, 2009; Efstathiou and Walker, 2014; Holms et al, 2014; Paganini and Bousso, 2015; Noome et al, 2016). Efstathiou and Walker (2014) expressed the view that the physical presence of monitoring equipment and invasive lines attached to patients introduces a level of restriction for relatives, which may prevent them from feeling close to dying patients, and create a sense of detachment. Most of the 13 experienced ICU nurses interviewed for the study acknowledged this to be a particular challenge in providing quality care but endeavoured where possible to reduce the technical environment and physical barriers to promote family proximity.
Discussion
The findings from this literature search reveal that, although the ICU nurses aimed to provide quality care for all patients, they often felt there was a lack of clarity on how to achieve this aim in practice due to a lack of an end-of-life care protocol (Noome et al, 2016) creating a situation where nurses often provided care based on personal interpretations of what good end-of-life care means. This finding raises the question of whether such approaches can support best practice and provide patients with safe care if it is not effectively evidence-based. It was evident among the reviewed studies that nurses considered both a lack of MDT involvement and guidance into how best to deliver end-of-life care within ICUs has a negative impact on the overall care they can provide. Although this predominantly related to receiving minimal end-of-life care training, it also included a general lack of expertise in prioritising care between a patient and his or her relatives.
The wider literature supports the value of inter-professional collaborative practice, recommending that MDTs communicate effectively and work in partnership together with patients to ensure the highest levels of end-of-life care are provided (Procter, 2012; World Health Organization, 2013; DH, 2016). The requirements also include assisting with the process of bereavement (The King's Fund, 2011) to ensure the needs of relatives are respected and explored (LACDP, 2014). Shared decision-making and improved communication within the MDT and between staff and patients will create a universal understanding of an individual's values and preferences and can be used to create care plans (Sinuff et al, 2015), enabling patients and their families to experience both high-quality care and a ‘good death’ (DH, 2008; Verhofstede et al, 2017; Nursing and Midwifery Council (NMC), 2018).
Continuous professional development on the subject of end-of-life care should be more widely available to staff at all levels to enhance knowledge and help improve both practice and the patient and carer experience (Brown and Vaughan 2013; Wood and Slater, 2013). Sykes (2015) supported the implementation of the guidance document One Chance to Get it Right (LACDP, 2014), stating that pathway-led approaches to end-of-life care are valuable where education is lacking. Dobson (2017) and Hussin et al (2018) raised the question of why such valuable end-of-life care training is currently lacking in pre-registration nurse education.
Dobson (2017) and Hussin et al's (2018) studies discussed the importance of end-of-life care training being introduced within the classroom and not only when such high-pressure incidents occur in clinical practice. It is imperative that in order to improve end-of-life care nursing skills, specific education to deliver the required knowledge should begin pre-registration and continue post registration to prepare nurses for the particular demands of caring for dying patients (Jeffers, 2014; Tirgari et al, 2016; Scammell, 2018). This is addressed by the NMC (2018), which stated that nurses, even at the point of registration, should be competent in adopting best practice approaches to support people at the end of life.
Conclusion
The findings from this review yielded evidence that nurses place particular importance on their role in end-of-life care due to their close physical proximity to, and the amount of time spent with, dying patients. They feel they are best suited to being fully involved in all aspects of end-of-life care. Throughout the chosen studies, nurses described their wish to promote best practice, dignity, respect and levels of care that respond to the individual needs of the dying patient (NICE, 2017b) to ensure quality measures are reached. However, the findings reveal that certain obstacles, whether they be organisational, institutional or those that raise moral questions regarding the focus of care delivery, often inhibit nurses from providing levels of care they deem to be appropriate.
Analysis of the six chosen studies revealed that the majority of the data supported the need for improved interdisciplinary communication, education and training in respect of how to best deliver end-of-life care. This related to numerous aspects. First, to improve the overall care that nurses felt they could offer to patients. Second, to understand how they can best prioritise the care offered to relatives to ease their emotional distress. Third, how best to provide quality care within the often intrusive and obstructive physical ICU environment. There was a collective notion among respondents to the studies that an appropriately utilised end-of-life care guideline specific to ICUs would assist with these measures.