How do hospital nurses experience end-of-life care provision? A creative phenomenological approach

In England, figures from 2017 show that 81% of people aged 75 years and older had at least one hospital admission in their last year of life (Public Health England (PHE), 2020). In other countries, between 52% (in France) and 76% (in Austria, Slovenia and Israel) of the population aged 66-80 had at least one hospital admission in the last year of life (Overbeek et al, 2017). As the populations of the UK and other European countries age, the use of health services is predicted to increase among those aged 65-80 (Rechel et al, 2009). In England, the figure for hospital admissions in the last year of life had been dropping before the pandemic, but there were still 227 272 deaths in hospitals in England in 2017 (PHE, 2019), indicating that palliative and end-of-life care continues to be important in the hospital setting.

Despite this there is a suggestion that, in hospitals, nurses' end-of-life practice may be challenged by the competing demands of treatment and palliation. The treatment-focused nature of the hospital setting may challenge the principles of palliative and end-of-life care. Gott et al (2012) revealed a perceived lack of responsibility for palliative care, with hospital nurses viewing their core task as treatment and not generalist palliative nursing.

Ambiguity regarding the priority end-of-life care patients receive over curative routines, as well as a lack of understanding of the nature of end-of-life care, has also been reported among hospital nurses (Willard and Luker, 2006; Dahlborg-Lyckhage and Lidén, 2010; Gott et al, 2012; Bergenholtz et al, 2016).

A UK report into hospital end-of-life care identified that poor care and poor communication were recurrent themes in complaints (Parliamentary and Health Service Ombudsman, 2015). This implies that care of the dying patient in hospital is challenging and leads to questions about hospital nurses' experience of providing end-of-life care and the competing priorities of treatment and palliative care. Consequently, this study aimed to find some clarity by understanding more about hospital nurses' experience of providing end-of-life care. It is hoped that the findings of the study will contribute to emerging knowledge and future research regarding end-of-life nursing care in the hospital setting. The findings may also contribute to the development of hospital nurses' education, policy and practice.

Aim

Research question

What is the lived experience of hospital nurses providing end-of-life care?

Objectives

• To understand hospital nurses' approach to death
• To explain how hospital nurses' ‘authentic self’ is negotiated when providing end-of-life care
• To identify how hospital nurses use power and knowledge in end-of-life care situations.

Definitions

For clarity and consistency in this study, the General Medical Council's (GMC) (2010) definition of end-of-life and palliative care was used (see Box 1).

Box 1.Definitions of end-of-life and palliative care
Advanced, progressive, incurable conditions

Source: General Medical Council, 2010

Methodology and methods

Interpretive phenomenology was used as the methodology to explore the nurses' experience. The focus of interpretive phenomenology is on understanding the human experience of the ‘life-world’ and is the method of bringing out and making visible human experiences that are normally hidden (Lopez and Willis, 2004; van Manen, 2017).

Discussing the end of life can be emotive. Visual research methods can offer ways of exploring emotions that language-based methods do not achieve, providing opportunities to express the unsayable and record meaning where verbally articulating a response is difficult (Guillemin, 2004; Gauntlett, 2015; Kara, 2015; Manny, 2016). Creative research methods have been used but can be inhibitive for adults (Guillemin and Drew, 2010; Vaart et al, 2018). Consequently, creative options were restricted to participants being asked to cut out images from a range of magazines and create a montage of visual metaphors representative of their experiences. At the beginning of the interview, participants were asked to silently reflect on their end-of-life care experiences and to select magazine images that represented how they felt when providing end-of-life care. Participants were left alone to freely complete this without the intrusion of the researcher. This was immediately followed by an audio-recorded discussion of their images to explore further the meanings attributed to the visual metaphors as an elicitation interview. Some of the images are described in Box 2.

Box 2.Some of the study nurses' images and their meanings
All names have been changed to maintain confidentiality

All names have been changed to maintain confidentiality

The researcher had experience with the topic as a nurse, positioning them as a practitioner-researcher with an insider (emic) view of what is being studied, rather than an outsider (etic) position (Jootun et al, 2009; Holloway and Biley, 2011). The shared vocabulary and understanding demonstrated by this emic position dispersed any power or authority held by the researcher and nurtured a relationship with the participants that contributed to an honest disclosure of experiences. The interviews were structured to be free flowing, with participants answering questions, but simultaneously engaging in conversational forms (Holstein and Gubrium, 2011). Using Wengraf's (2001) model of lightly structured interview preparation, a set of trigger questions were formulated, and an interview schedule was used. The average length of each interview, including selecting images, was 120 minutes.

Participants were enlisted following a recruitment campaign in targeted hospitals and post-registration university courses. The eligibility criteria for the participants were practising registered adult nurses with experience of providing end-of-life care in the secondary care setting. Potential participants were excluded if they were not registered nurses, were not adult nurses or did not have experience of end-of-life care in the secondary care setting.

Ten participants were recruited following a recruitment campaign in three hospital trusts and a university. All the participants were registered general adult nurses with clinical experiences of providing end-of-life care in the acute hospital setting. Recruitment was slow; it took 18 months to achieve a sufficient number of participants. This was directly attributed to the creative aspect of the interviews (Kara, 2015; Vaart et al, 2018). All 10 participants were female with a mean age of 47 years and a mean of 26 years in nursing. All the participants had experience of providing end-of-life care in the secondary setting, six at the time of recruitment were providing frontline care. Participants had a background in surgical care, rapid response, emergency care, critical care, high dependency, coronary care, urgent care and intensive care.

Data analysis

Individual interviews were conducted to obtain details regarding the visual metaphors and the participants' views to arrive at common concepts integral to the experience. Interview audio recordings were transcribed and data were analysed following Ricoeur's approach to hermeneutics, which is to determine the meaning of the text by interpreting the intention of the author (Ricoeur, 2016).

The texts were read with an explanatory attitude and then with an interpretive approach (Ricoeur, 1981). The researcher followed Ricoeur's method of structural analysis to achieve this by moving between a series of possible interpretations of the text, which were tried against potential explanations and either dismissed, or accepted. Using one of the participants' – Mary's – metaphor of having a ‘professional hat’ as an example, the structural analysis was informed by a triangle of interpretations: the text itself, semantics and a series of interpretants – these being the potential interpretations from references made by the other nurses. Different judgements of Mary's explanation and meaning of the image of the hat were explored (Box 2). Notes were taken on possible meanings and links to similarities with other areas in the texts to substantiate or dismiss the meaning, facilitating a reasoned interpretation and understanding (Ricoeur, 1981; 1984). Explaining the text was a dual process, being both deductive and inductive. The connection with the text and events Mary described about the hat is a deductive process. Making judgements on the latent factors is inductive, giving weight to opposing arguments and defending them and evidencing the reasons (Ricoeur, 1984). Following this process, interpretation was supported and mediated by the text, with ideas of interpretation being supported or dismissed (Ricoeur, 1981). Mary's idea of the hat and the meanings attributed were explored by the other nine participants. The interpretation of what was meant by a ‘professional hat’, an emotional buffer, was informed by this process. The final stage was appropriation, which Ricoeur described as ‘to make one's own’ the actualisation of meaning, its base firmly set in the ground of the lived experience (Ricoeur, 1981: 147).

Findings

Analysis of the participants' discussion led to the development of several themes that explained hospital nurses' experiences of providing end-of-life care. What follows is a summary of three themes:

• Hospital nurses' approach to end-of-life care
• Hospital nurses' protection of their authentic self
• Hospital nurses' use of authority and collaborative power in end-of-life care.

Hospital nurses' approach to end-of-life care

The nurses in this study demonstrated that their individual approach to death was a significant influence on how they provided end-of-life care. This was based on a belief that a good death should be calm and tranquil with the nurses describing the process leading up to the final stages as ‘stormy’. After the trauma of treatment, for most of the nurses in the study, end-of-life care was about creating calmness, as one participant explained:

‘Making your patient comfortable, clean and hair brushed, actually what you are saying is “it's calm and look how well looked after Dad has been and loved”.’

Louisa

This was echoed by other nurses in their descriptions of how they manage the hospital environment for their patients. In particular, Virginia described the peace she tried to create to shield patients from the busy ward.

As well as calm, the nurses described an approach towards end-of-life care of human connection. This was presented as the person not being alone, and being with family, as well as getting to know the person as an individual. Barbara's exposure to death in the emergency department led her to believe in the importance of the patient's identity, which she described as ‘getting alongside the person’ by making the effort of getting to know something about them. Her image of a bird represented a patient who she knew was a keen bird watcher. Knowing this and taking the time to be interested as he was dying was important, Barbara felt, in ‘getting alongside’ him and preserving his identity. For Martha, the presence of another person was essential; without human connection, death becomes a ‘cold forest’ and the forest needs to be made warm by a human presence in end-of-life care.

A third approach towards end-of-life care that was evident from the nurses' experiences was ‘death as process’. Louisa describes ‘grotty situations’ that are physical and ‘brutal’, involving body fluids. End-of-life care can be ‘a physical thing’ and a death-as-process approach hides the physical trauma.

This is the ‘doing’ of care and for several of the nurses this was about the environment. Ethel used the metaphorical image of a ‘shawley blanket’ for making the environment homelier. Her encounter with a dying patient who brought her shawley blanket from home reminded her of this. When she died, the patient's family commented that the shawley blanket made a difference – ‘bringing home into the place’.

The dominant approach to end-of-life care was calm, but this was not exclusive, with the other approaches being interwoven explaining that hospital nurses' end-of-life care is influenced by these three concepts that construct the nurses' idea of what end-of-life care should be, leading to their individual ideas of good end-of-life care and a good death.

Hospital nurses' protection of their authentic self in end-of-life care

The nurses' reported experiences of end-of-life care indicated that when engaging in such care they protect their own emotions to enable them to continue to deliver care to their patients. The hospital nurses in this study described two forms of protecting their authentic self from the emotions encountered while providing end-of-life care: ‘professional identity’ and ‘defence of self’. Protection as professional identity used nursing's professional image to distance the nurses' authentic self from the situation and contain emotions in end-of-life care situations by being a professional nurse and emotionally removed. Mary used the image of a hat and described that, when having her professional hat on, she is protected from getting too involved with the patient who is dying.

‘When I go home to my family, I take my uniform off.’

Mary

In this example of protection as professional identity, Mary described how she uses her uniform as an emotional buffer, protecting her authentic self. Hilde and Louisa held similar views, using the role of being a nurse to separate their emotions so they can remain professional, focusing on the patient. Hilde described this as being in ‘nurse mode’ but allows herself:

‘A few moments to just to think “come on, catch your breath”, park any emotion in that corner, and do your stuff and be clinical.’

Hilde

Defence of self uses the idea of a shield to defend against the potential emotional trauma in the end-of-life situation by cognitively engaging, presenting themselves as approachable and understanding, while being emotionally distant. For Nancy, the metaphor of a Baked Alaska described this shield, the ice-cream is shielded by the outer layer of meringue:

‘I would defy you not to cry where it is an 8 year old [who has died] and mum has dressed him in his football kit … the Baked Alaska ice cream would melt if it came into contact with the heat, so the ice cream is shielded by this soft outside.’

Nancy

The nurses in this study were all successful in protecting their authentic selves to allow them to continue providing care. But this does not mean they were not affected by the care they provided. Hilde described allowing herself to go into the toilet to release all the emotion because someone had died before she saw the next patient. When describing emotional support, Nancy discussed the formal support that was available to the team, particularly after a difficult or traumatic death. In contrast Mary reported:

‘Nobody has ever asked me if I'm all right after a death.’

Hospital nurses' use of authority and collaborative power in end-of-life situations

The uncertainty of the end-of-life situations also had an impact on how the nurses managed end-of-life care situations. For some of the nurses, the achievement of ‘calm’ for the patient was not easy and related to empowerment. This was clearly expressed by Virginia when she reported that:

‘Sometimes you have to fight for your patient.’

Virginia described the tensions that can occur with near-death situations in the acute setting. Virginia discussed ‘juggling’ and ‘appeasing’ to achieve her end-of-life care but also having to battle for what she believes is right for her patients. This implies a negotiated form of power. Mary also described conflicted situations and recalled such instances:

‘I have been asked how long did I think somebody was going to take to pass away. Because they want the bed.’

In this instance, Mary reminded the person that patients are human beings and that ‘it's about the care they need’.

Other nurses in the study had more autonomy and were more empowered to achieve the desired calm. Ethel and Louisa described the actions they took to transition patients to calm: preparing the environment, focusing on more personable things, using a ‘shawley blanket’ as a metaphor for the change in environment when someone is dying. Hilde described her careful preparation of the death and detailed the planning involved so the family did not have painful memories to recall.

Discussion

The nurses in the hospital setting presented three approaches to end-of-life care. The dominant approach was ‘calm’, along with ‘death as a process’ and ‘human connection’. These were interwoven to influence the nurses' idea of what end-of-life care should be, leading to their ideas of good end-of-life care and a good death. This contrasts with Costello's (2006) study, which found hospital nurses' idea of a good death focused on the death event rather than the dying process. The concepts of creating peace and maintaining a human presence were similar to other findings (Hopkinson and Hallett, 2002; Becker et al, 2017).

Evidence from this study suggests the hospital nurses used two categories of protection of their authentic self: ‘professional identity’ and ‘defence of self’. Both these forms of protection were successfully used to enable the nurses to manage their emotions so they could continue providing the care needed. Previous studies have identified that nurses regulate their emotions to protect themselves, with individual nurses choosing how to connect emotionally (Froggatt, 1998; Henderson, 2001; McMillen, 2008; Roche-Fahy and Dowling, 2009; Hayward and Tuckey, 2011). This study supports this concept but develops understanding further by exploring how nurses in the hospital environment regulate their emotions when providing end-of-life care. As methods of containment of emotions ‘professional identity’ and ‘defence of self’ enabled the nurses to continue with end-of-life care while protecting their authentic self.

Similar to the findings of Hayward and Tuckey's (2011) study, the nurses in the present study continued to engage with the patients and their families but contained their emotions, indicating they were using emotional distancing to enable them to continue providing end-of-life care. As in this study, nurses have been shown to use emotional containment to mentally distance themselves from threats encountered in their work (Froggatt, 1998; Hayward and Tuckey, 2011; Peters et al, 2013; Decker et al, 2015). This has been described by Hayward and Tuckey (2011) as cognitive engagement with emotional distancing. Although Mary reported that nobody had asked her if she was all right after a death, it should be noted that the study was conducted prior to the recent emphasis on staff 's wellbeing, as set out in the NHS People Plan (NHS England/NHS Improvement, 2020), which describes a wellbeing strategy for staff.

To enable an environment of calm in the hospital setting, the nurses in this study described the use of authority and a collaborative use of power. Not all the nurses shared the same level of control and empowerment with end-of-life care, with the environment being the main factor in this study. This supports Rao's (2012) view that it is the individual nurse that is empowered to assume control over their practice. A negotiated approach between the nurse and the team to achieve the goal of calm was evident and is indicative of collaborative action and a ‘power-to’, or ‘authority-in-fact’ approach (Tillich, 1954; Hawks, 1991; Florczak, 2016). A ‘power-to’ approach involves co-operation, trust and shared leadership and differs to a ‘power-over’ approach which involves dominance and force (Hawks, 1991). ‘Power to’ is similar to an authority-in-fact approach (Tillich, 1954), which is a mutual authority, recognising the authority we all hold and the mutual dependence we have on each other. As with ‘power to’, it is a collaborative authority that embraces the mutual dependence of those involved in end-of-life care. By using such approaches, the nurses were not using their power as a desire for power themselves, or a ‘nurse knows best’ authority, but collaboratively in the interests of those in their care.

The findings of this study can be represented as a ‘harbour’, a model developed as a result of this study. The sea can be unpredictable, and the weather might change at any time, but the harbour is calm, out of the storm. To maintain the calm those involved negotiate, they use the protection of the harbour, and they need knowledge to maintain the calm.

Strengths and limitations

By using a visual research method, the authentic feelings of the nurses were uncovered, which a language-only approach may not have exposed. As a phenomenological study, the findings cannot be generalised to the population of all hospital nurses. The outcomes are presented as ‘meaningful insights’, revealing the significance of a lived experience (van Manen, 2017).

All the participants were female and therefore any gender variations in the experience of the phenomenon were not available. In particular, emotions and protection of authentic self among male nurses may be different, with a suggestion that male nurses feel uncomfortable with emotional contact (Gray, 2010). Male nurses' experience of authority in end-of-life care is also not addressed in this study. Although male nurses are perceived to hold more ‘power-to’ in decision making, they can also be an oppressed group (Brown, 2009).

Implications for practice are set out in Box 3.

Box 3.Implications for practice: four aspects of the ‘harbour’ model
Hospital nurses are at risk of stress and emotional burnout and need formal support in the workplace. This needs recognising in the clinical setting and appropriate measures taken to help nurses to mitigate the effects of providing end-of-life care

Conclusion

The findings of this study suggest the hospital nurses effectively manage the tensions between treatment and palliation. This is achieved by approaches towards end-of-life care that incorporate calm, suggesting that hospital nurses' end-of-life clinical practice may focus on transitioning from the ‘storm’ of treatment to the calm of dying, as well as the practicalities of end-of-life care and human connection. Further research to include less experienced nurses and nurses who may avoid providing end-of-life care would contribute further to the understanding presented by this study.

To enable this care, the nurses used professional-identity and defence-of-self approaches to successfully protect their authentic selves. These protective actions should be recognised in the clinical setting and appropriate measures taken to help hospital nurses mitigate the effects of providing end-of-life care.

This should be recognised in the education setting and effective emotional defence mechanisms evaluated and integrated into the education curriculum.

The nurses used a negotiated power, or ‘power-to’ approach, to transition the patient from the ‘storm’ of treatment to calm. The hospital nurses in this study did not use an authoritative ‘nurse knows best’ approach. This approach to end-of-life care should be recognised so that the potential skills nurses need for managing and leading end-of-life care in the hospital can be realised and developed. Further research developing the understanding of nurses' use of negotiated power in end-of-life care found in this study is needed.

KEY POINTS

• In this study, hospital nurses' end-of-life clinical practice focused on transitioning from the ‘storm’ of treatment to the ‘calm’ of dying, as well as the practicalities of end-of-life care and human connection
• Hospital nurses protect their authentic self to be able to continue caring but may be denied the opportunity to express their emotions in the clinical setting. Clinical areas need to take appropriate measures to help hospital nurses to mitigate against the effects of providing end-of-life care
• Hospital nurses use a collaborative and negotiated form of authority in end-of-life care. They do not use an authoritative ‘nurse knows best’ approach. This should be recognised so that the potential skills nurses need to lead and manage end-of-life care in hospitals can be realised and developed

CPD reflective questions

• The experiences of the nurses presented in this study suggest that end-of-life care in the hospital setting is about transitioning from the ‘storm’ of treatment to one of calm. How does this equate to your own experience?
• Love is presented as one of the five components of the ‘harbour’ model, rather than compassion. Reflect on your own experience and the ideas presented and use this to review your understanding of this concept
• Nurses in the study protected their authentic selves to be able to provide end-of-life care. Is this part of practice you recognise in yourself?
• One of the five components of the ‘harbour’ model is authority; a negotiated authority used by hospital nurses in end-of-life care. Reflect on your own experience of how you use authority in end-of-life practice