It is estimated that the number of older adults in the world will more than double by the year 2050, which is expected to increase demand on every aspect of health care, including end-of-life (EoL) care (United Nations, 2017). This will present a challenge to nursing care in hospitals (Gill and Duffy, 2010; United Nations, 2017; Hunter and Orlovic, 2018). Although increasing numbers of people express a preference for receiving EoL care at home, the proportion of deaths occurring in hospitals is rising (Wee et al, 2018; Public Health England, 2019). Most adult hospital wards and specialist units are therefore expected to provide EoL care (Quill and Abernethy, 2013).
Nurses working in non-specialist wards report limits to knowledge and skills in providing EoL care (Gill and Duffy, 2010; Udo et al, 2011; McCourt et al, 2013). Many express the view that terminally ill patients should ideally be cared for in palliative care units where increased time, dedicated communication skills and scope to provide psychosocial care are more readily available (McCourt et al, 2013).
Caring for dying people can be challenging, and is a recognised stressor for nurses (Peterson et al, 2010; McCourt et al, 2013; Peters et al, 2013). Providing EoL care can be associated with feelings of powerlessness and exhaustion in nursing staff (Sherman, 2004; McCourt et al, 2013). Stress can be heightened by ineffective communication among professionals, patients and families, lack of formal training, understaffing, time limitations, and challenging symptoms (Gill and Duffy, 2010; Mahtani-Chugani et al, 2010; Caswell et al, 2015; Oliver and O'Connor, 2015). Nevertheless, nurses report that providing EoL care can be rewarding when they have enough time, resources, knowledge and skills (Johansson and Lindahl, 2012; Omar Daw Hussin et al, 2018).
Existing studies of nursing have explored experiences of providing EoL care in intensive care units, hospices and oncology wards, but there is scope for further research to better understand the experiences of nurses working in general settings (McCaughan and Parahoo, 2000; Hopkinson et al, 2003; Oliver and O'Connor, 2015). A knowledge gap is identified between nurses who work in palliative/oncology wards and those who work in other settings (Johansson and Lindahl, 2012; McCourt et al, 2013). A greater understanding of the experiences of general nurses providing EoL care may therefore influence and enhance the care of terminally ill patients in their last hours or days, and may help to guide training and education.
In this study, orthopaedic surgical nurses were chosen as an example group with limited exposure to EoL care, but who are expected to provide such care when needed.
Aim
The aim of this study was to explore the experiences of surgical nurses while caring for the dying patient in an acute care setting.
Method
Design
This was a qualitative study using semi-structured interviews with orthopaedic nurses to explore experiences of providing EoL care.
Sampling, identification and recruitment
This study was conducted at an NHS hospital in the UK. A purposive technique sampled eight band 5 staff nurses without specialist palliative training, as they are heavily involved in providing direct care to patients. Band 6, 7 and 8 nurses were excluded because of their different roles and responsibilities. The term ‘general’ or ‘non-specialist’ is used to refer to wards, professionals and settings that do not deal with dying patients routinely. Potential participants were invited by email, and posters were displayed in wards. A participant information sheet was provided before obtaining informed consent. It was made clear to participants that they could withdraw or halt the interview at any time.
Interviews
Face-to-face semi-structured interviews were conducted in a private room at the hospital site. An interview schedule was used to ensure required information was obtained, while allowing freedom for open responses (Polit and Beck, 2008). The interview guide was developed from a literature review, research question and study aim and objectives. Interviews lasted between 22 and 33 minutes.
Data storage and analysis
Data were recorded on an encrypted and password-protected voice recorder, uploaded to secure servers at the university, and archived in accordance with local policies and procedures. Recordings were transcribed by the lead researcher, which facilitated immersion in the data. Thematic analysis was undertaken using NVivo software, version 12 (https://tinyurl.com/4k3d96pv) on licence to the University of Sheffield (Bryman, 2016).
Ethical approval
The protocol received ethical approval from the University Research Ethics Committee (REC), and the Health Research Authority (IRAS ID 245428). As the study involved only staff, it did not require NHS Research Ethics Committee approval. Local Research and Innovation approval was obtained.
Results
Eight participants were recruited. All were female with clinical experience ranging from 3 to 20 years. Five broad themes emerged:
- Understanding of and preference for EoL care
- Perceived barriers while providing EoL care
- Strong support from the team as a facilitator while providing EoL care
- Symptom management
- Future training and support.
Themes and sub-themes are shown in Figure 1. Themes are supported by quotes, which are largely verbatim, although some have been edited for clarity.
Figure 1. Themes and sub-themes that emerged in the study
Theme 1: understanding of and preference for delivering EoL care
This theme describes how the nurses understood the concept of EoL care and where and how they felt it could best be delivered. This theme was identified throughout the interviews. All participants considered EoL care as specialised care, distinct from the care typically provided in the surgical setting. Most perceived that special skills are required to identify all the needs of dying patients and families, and felt that infrequent exposure meant that these skills were not fully within their skillset. One participant highlighted this in a direct comparison with palliative care professionals:
‘… but I still think there are “fine tunes” in palliative nursing, and they know a bit more than we would, really.’
Participant 5
Despite this, all participants felt that they could assess, identify, and treat physical needs such as pain and discomfort. All nurses recognised that initiation of EoL care is a period of emotional turbulence when they should be able to provide more attention and care to the patient and families. All acknowledged the importance and privilege of their role and aimed to provide dignified care to their patients:
‘I think it's really nice that we've got power to do that as health professionals, and it doesn't have to be a scary and painful and terrifying process. It can be something very controlled and gentle and peaceful.’
Participant 8
One observation arose from the presence of mixed surgical and dying patients in one setting. A participant expressed that caring for recovering surgical patients in a bay provided ‘positive energy’ to care for dying patients in side rooms. Conversely, participants expressed the concern that recovering surgical patients would not be as motivated when dying patients were in the same ward. Most of the participants preferred dying patients to be cared for in a palliative setting:
‘We can look after [end-of-life patients] in a general ward … but end-of-life care is more than symptom management. You are supporting the family as well.’
Participant 6
Participants accepted the higher demands on beds in the hospital as a part of nursing, although they felt ‘strange’ after seeing a new patient in the same bed soon after a patient had died:
‘It's a bit strange … we get a patient soon after. They want to use the bed straight away. There is always a demand for a bed. So, we try to cope with it, that's real life [in nursing].’
Participant 3
There was a general perception that continuity of nursing care is beneficial to both the dying patient and their family—helping to understand and identify any minimal changes or signs of deterioration of the dying patient and adapt and plan the care accordingly. Similarly, it benefits the family; nurses can build on relationships to provide emotional and psychological support to the families.
Some staff members found that the emotional impact was challenging when providing EoL care for consecutive shifts. One participant reflected that, despite finding it difficult, gratitude from family members is helpful.
‘I think if the patient's family are happy, I feel like we have done our job. Sometimes it is hard, but you can see that the patient's family are happy and thankful by looking at the card that the family gave.’
Participant 7
In summary, participants reported that delivery of EoL care is rewarding, requires an investment of time and energy and involves a combination of specialist and generalist skills. It can be challenging in a general setting when the nurses are looking after a varied patient population while managing bed pressures and competing needs for side rooms.
Theme 2: perceived barriers while providing EoL care
This theme appeared while asking participants about the difficulties they encountered while delivering EoL care. Sub-themes were communication, lack of time, physical infrastructure, and inappropriate and delayed treatment.
Sub-theme 1: communication
One of the fundamental issues of EoL care among all interviewees was ineffective communication with the patient and family members despite the length of their clinical experience. Most of the participants expressed the fear of worsening the family's situation while conversing with family members.
One participant described how she had learned from experience that being open, honest, and using specific terminology helped with communication; another participant described how she preferred these discussions to be led by doctors; nevertheless, the small sample size means this must be interpreted with caution:
‘It is one of those topics that is hard to touch on. Hmm, it is just one of those things. I would rather have a senior member of staff to go through because I feel like they have authority. I would rather have a doctor or band 6 or band 7 than me … Probably I would not be comfortable telling the family members …’
Participant 7
Sub-theme 2: lack of time
Participants were unanimous in describing a desire to spend more time with dying patients and their families. Although they felt they were able to support the holistic needs of the post-surgical patient, such as personal care, rehabilitation, preventing illnesses, meeting social needs and discharging safely, participants described feeling restricted in the time they could spend with terminally ill patients and families. The acute needs and dependency of the recovering surgical patients competed with the psychological and emotional needs of dying patients and their families:
‘It's the family who struggles, and they need the emotional support which, when you have got other patients, you just can't go to stand by them [dying patient's family], hug them, and pat them and say, “it's gonna be okay”, because you are too busy.’
Participant 6
Sub-theme 3: physical infrastructure
Participants reported that the physical infrastructure of the ward had the potential to impact on the standard of EoL care. Some described adapting the physical environment to provide additional space and privacy for a terminally ill patient; for example, closing the neighbouring bed space in a bay to maintain privacy when a side room was not available. However, privacy was not ensured entirely. Similarly, privacy and the grieving process were affected by the openness of the ward as only the day room was available for discussions with family and health personnel. In addition, participants felt that having a spare room with a bed would be more comfortable for family members of dying patients, and discussed difficulties in providing a calmer and quieter environment for families within a busy acute setting:
‘I think it is very noisy, it isn't very relaxing for the relatives because it's not really the environment [they want to be in] if they had the choice.’
Participant 5
Sub-theme 4: inappropriate and delayed treatment
A common issue among interviewees was the possible delay in the initiation of EoL care despite ongoing clinical deterioration; this delay was more common in patients who were of different specialties than elective orthopaedics (known as ‘outliers’).
One specific example reported was the potential for drug prescription time to be lengthened for different specialty patients, with limited guidance in notes. Furthermore, junior doctors of that specialty would tend to defer a decision to a senior, which risked further delays in prescribing. This was in contrast to cases where junior doctors were working within the ward specialty, and were able to escalate decisions more rapidly.
‘I think sometimes … when there's a specialty you are in and somebody [needs end-of-life care], it's a lot easier because the doctors are here.’
Participant 7
Some participants felt that inappropriate care continued longer than necessary among terminally ill patients. A participant expressed that it was painful to provide continued active treatment to the patient at the EoL that potentially added to the patient's burden.
Overall, participants' perceived barriers while providing EoL care were interlinked. With the proper guidance and support from interdisciplinary team members, participants felt that these perceived barriers could be alleviated or prevented.
Theme 3: strong support from the team as a facilitator
In contrast to the number of barriers, one clear facilitator of EoL care delivery was identified: participants sought help from team members such as senior nurses and colleagues. Participants described excellent teamwork among their colleagues; they would often ask for support from each other. Interviewees reported that working in a team is an advantage where a good team spirit can assist in resolving challenging situations:
‘It's hectic, but if you've got a good team, it's just like everyone supports each other and you're going through the same thing.’
Participant 7
Similarly, a palliative care link nurse on the ward played a significant role in updating and informing other staff members of any changes in the policy and delivery of EoL care.
Theme 4: symptom management
This theme emerged as participants described confidence in managing the physical symptoms of dying patients. When providing EoL care, nurses assessed physical signs of pain and discomfort and administered anticipatory drugs as per prescription. Almost all participants said that they were confident to administer medication to alleviate physical symptoms:
‘I think [managing pain is easier] because even if they can't tell you, you can see it in their face, so you can help them with pain relief … and sickness you can see and help with antiemetics … when they feel something on their chest, we can give something for that. Those sorts of things, physical things, are easy to deal [with].’
Participant 2
One participant regarded administering analgesia to a dying patient as similar to giving analgesia to a surgical patient, although the care of these patients was otherwise different. There was a clear understanding of the administration and side effects of medication among the nurses; and they were aware of the importance of balancing symptom control against side-effects such as sedation.
Conversely, managing psychological and emotional issues was less straightforward for the participants. Unlike physical symptoms, there is often no prescription or guideline for psychological and emotional problems. Feelings of inadequacy in providing psychological and emotional support to the patient and family can influence the experiences of providing EoL care:
‘But how they are feeling … you can't make that any better. You can't make the feelings go away, so that's harder. And answering a question like “Why am I dying?” … “Why can't you fix this?” … “Why can't you mend me?” They are hard questions.’
Participant 3
Theme 5: future training and support
This theme emerged when participants were asked how EoL care could be improved, and if any training would be beneficial. All participants felt that providing training to the team could improve delivery of care. Examples included communication, documentation, physical and psychological symptom management, equipment used in EoL care and religious and cultural issues. One participant suggested having a debrief after the death of a patient to support staff members. In this way, they would feel appreciated, and all the team members could learn what might be done differently in future.
One participant also expressed that shadowing experienced nurses could be an opportunity for less experienced colleagues to learn how to anticipate and manage a difficult situation. Most participants recommended training and updates on the use of equipment at least yearly if not bi-annually as participants do not look after dying patients regularly:
‘Things like learning about how to set up a syringe driver and things like that, which I think most of us know but we don't do with a lot of dying patients. Maybe like updates on that at least yearly if not six-monthly.’
Participant 2
Discussion
This study has provided insight into the experiences of surgical nurses while delivering EoL care in a non-specialist ward. Reported challenges included communication with patients and families, limited time, physical infrastructure, and inappropriate and delayed treatment.
Participants described a sense of privilege and responsibility in caring for dying patients and acknowledged this as a part of their professional role, as mentioned in previous studies (Johansson and Lindahl, 2012; Mak et al, 2013; Gagnon and Duggleby, 2014). Nurses reported receiving ‘positive energy’ while caring for recovering surgical patients as recognised by Johansson and Lindahl (2012), which eventually helped them care for dying patients.
One challenge reported by nurses in this study was communication with the patient, family and other health professionals. The finding is common in other research (McCourt et al, 2013; Oliver and O'Connor, 2015; Omar Daw Hussin et al, 2018). Ineffective communication was a reported barrier to EoL care in this study, irrespective of the duration of clinical experience. A study by Oliver and O'Connor (2015) reported that an experienced non-palliative nurse would request help from palliative nurses to discuss treatment and plans for terminally ill patients. Nurses in this study preferred medical and senior nurses to lead sensitive discussions about sensitive topics.
In comparison with acute care, EoL care is more focused on keeping the patient and family comfortable, whereas surgical patients are in the recovery process. Nurses providing EoL care often feel that they lack time. One possible reason for this could be related to task orientation in general nursing. Nurses in these settings may focus on more readily approachable tasks such as the physical needs of a dying patient as opposed to psychosocial or familial care (Clarke and Ross, 2006; Bloomer et al, 2013; Neuberger et al, 2013).
Participants found fulfilling the requirements of recovering surgical patients while delivering EoL care to be challenging as mentioned in previous studies (Casey et al, 2011; Johansson and Lindahl, 2012; Raymond et al, 2017; Omar Daw Hussin et al, 2018). Psychosocial care for patients and families takes a lower priority while fulfilling the physical needs of the dying patient. This finding is consistent with previous studies (Gill and Duffy, 2010; Bloomer et al, 2013). The delivery of EoL care is affected by the absence of a policy of allocating a fixed nurse–patient ratio in medical-surgical wards, unlike in specialist care (Royal College of Nursing (RCN), 2011). It is noticeable that, where a minimum nurse–patient ratio is mandated, better patient care, nurses' increased job satisfaction and a reduced level of nurses' stress are reported (Aiken et al, 2010; RCN, 2011; Johansson and Lindahl, 2012).
As in previous work (Gill and Duffy, 2010; Bloomer et al, 2013), participants in the present study preferred dying patients to receive care in a palliative ward. It has been reported that nurses are concerned about the privacy of the patient and family members being compromised in general wards by the unavailability of rooms for discussion of sensitive topics (Thompson et al, 2006; Al-Qurainy, et al, 2009). Similar concerns were identified in the present study. Holistic care can be better provided when a specific room is available for the dying patient and a family (Slatyer et al, 2015). A degree of privacy is created with closed curtains in bays, but conversations can still be overheard (Clarke and Ross, 2006).
Participants in the present study reported a need to ensure that EoL care processes would not be initiated for a patient inappropriately; this is particularly important in light of challenges arising from the now-withdrawn Liverpool Care Pathway (Neuberger et al, 2013; Cauldwell and Stone, 2015). Unavailability of senior doctors risked a delay in initiating EoL care or prescribing appropriate medications for outlying patients.
Participants were appreciative of the provision of support from specialist palliative nurses for managing symptoms as in Oliver and O'Connor's (2015) study. However, participants did not seek any formal help such as chaplaincy services or counselling. The National Institute for Health and Care Excellence (NICE) (2019), Hospice UK (2019) and the RCN (2015) have recommended the provision of regular training to non-specialist staff so that they are well prepared and able to offer high-quality care to dying patients across all settings..
This study also underlined the recommendation of training in effective communication skills, medical devices, symptom management and sharing experiences (debriefing) with clinical or non-clinical staff after the death of a patient, which is beneficial to mental health and confidence (Al-Qurainy et al, 2009; McCourt et al, 2013; Omar Daw Hussin et al, 2018). However, previous research suggests some nurses may be reluctant to attend a debriefing session because of the fear of being identified as weak (Zheng et al, 2018).
Strengths and limitations
As far as the authors are aware, this research is the first of its kind to investigate the experiences of surgical nurses while providing EoL care in a surgical ward (elective orthopaedics) in the NHS. Notwithstanding the relatively limited sample size, this work lays the groundwork for future research for the enhancement of EoL care for patients and families along with the healthcare providers.
Interviewing only eight staff nurses from two wards restricted the generalisability of the results of the study. However, the results could be relatable to a similar setting. At the time of data collection, there were no dying patients in either ward. Had there been a terminally ill patient at the time of interviewing, a similar or a different perspective could have unfolded. The interviewer was a member of the nursing staff at the hospital, which introduced the potential for bias. To minimise the bias from the researcher, the research objectives and protocol were followed thoroughly, and the thematic analysis was reviewed by a second researcher (PT) in the role of academic supervisor.
Conclusion
Participants perceived caring for terminally ill patients as a fundamental part of their role. This study has, however, highlighted the challenges associated with delivering EoL care in a non-specialist setting. Key barriers and facilitators have been outlined. Dedicated training is vital for supporting this care, whether aimed at teaching specific skills or enabling open and honest reflection. Improved staffing levels could help in eliminating barriers such as time constraints. There is a need for further research and training regarding surgical nurses delivering psychological support for dying patients and their families, and recommendations are required in areas such as nurse–patient ratios, the physical set up of the ward and caring for patients from other specialties.
KEY POINTS
- Delivering end-of-life (EoL) care in acute hospitals is a growing challenge
- Delivering EoL care in the acute setting can be a source of stress for nurses
- Nursing staff recognise the value of specialist units and teams in delivering EoL care, but also recognise that it is a core skill for all nurses, with symptom control a key priority
- Reported barriers to delivering EoL care are communication challenges, time pressures, physical infrastructure, and mismatched expectations
- Good team infrastructure and support enables effective EoL care to be delivered
- Nurses would value dedicated training and reflection opportunities for themselves and their colleagues when caring for patients at the end of life
CPD reflective questions
- Think about your experience of providing end-of-life (EoL) care in an acute care setting
- What are the perceived barriers or facilitators for providing EoL care in your setting?
- Think about the education and training that could improve EoL care in your clinical area