The Liverpool Care Pathway (LCP) was promoted as a care pathway that aimed to ensure minimum standards of care to all terminally ill patients (Ellershaw and Wilkinson, 2011). It was supported and endorsed by both the Department of Health (DH) (2002)and the National Institute for Health and Care Excellence (NICE) (2004) as the gold standard in palliative care settings (Sprung et al, 2003). However, the media developed an alternative narrative whereby the LCP was portrayed as a ‘death pathway’ (Martin, 2009 and, similarly, a ‘pathway to death’ used ‘to hasten deaths to save the NHS money and free up beds’ (Rawstorne, 2012). Such adverse reporting and the resultant rise in public concern (NHS website, 2012) culminated in a review of the LCP, which highlighted concerns relating to dehydration, malnutrition, unnecessary opioid usage and a lack of family involvement (Neuberger et al, 2013). As a response to this, the DH commissioned the Leadership Alliance for Care of Dying People (LACDP) to make recommendations in the form of the published guidance: One Chance to Get it Right (LACDP, 2014). The initial priority was to phase out the LCP by July 2014.
The aim of this study was to investigate palliative care nurses' views of end-of-life care following the phasing out of the LCP.
Literature review
Before conducting this research, a review of the literature was conducted in order to develop a wider understanding of professionals' experiences of working with the LCP. Both expert opinion and research carried out with professionals (Jack et al, 2003; Gambles et al, 2006; Walker and Read, 2010; O'Hara, 2011; Twigger and Yardley, 2017) present a contrasting perspective to that proffered by the media. This ‘insider’ view indicates that the pathway helped improve and streamline end-of-life care (Gambles et al, 2006; Walker and Read, 2010) and that the poor care highlighted in the media and subsequent review was not caused by any inherent failures of design; rather, the LCP was used as a scapegoat for a range of broader, underlying concerns (Regnard, 2014). These wider factors relate to issues of insufficient staffing (O'Hara, 2011), inadequate training and education of staff (Gambles et al, 2009; Walker and Read, 2010; O'Hara, 2011) and the resultant issue of poor decision-making (Chinthapalli, 2013).
Furthermore, there is evidence that the LCP was a useful tool, when used correctly and employing a multidisciplinary team approach, which led to a dignified death in the vast majority of cases (Dee and Endacott, 2011; Ramasamy Venkatasalu et al, 2015). Any actual failings may therefore be an indication that managers needed to be more proactive in providing further education and training around the pathway (Dee and Endacott, 2011). Evidence also suggests that ‘human factors’ (Twigger and Yardley, 2017) involving the misapplication of the LCP document were a significant factor leading to the removal of the LCP, as opposed to any failings of the pathway itself. Similarly, much of the adverse media attention can be seen as being politically motivated (Seymour and Clark, 2018). It is also made clear that further research into the effectiveness of the LCP was required prior to the publication of the Neuberger review (Neuberger et al, 2013), raising the alarm that the findings in the report may have been avoided if further research and training had been reviewed and implemented (Dee and Endacott, 2011; George et al, 2014).
The removal of the LCP may not be the panacea for the problems facing palliative care. Instead, the underlying issues persist (George et al, 2014). Moreover, the absence of any nationally recognised guideline to replace the LCP may leave those professionals at the forefront of palliative care being exposed to inconsistencies, uncertainties, and clinical ambivalence, resulting in a disjointed approach to care (Ramasamy Venkatasalu et al, 2015). Although regional trusts have developed care plans and guidance around the DH and LACDP recommendations, to date, there is no nationally recognised framework in place. What is clear is that this fragmentary approach, for both patients and staff alike, has the potential to transform palliative care into a postcode lottery owing to a lack of a national gold standard (Ramasamy Venkatasalu et al, 2015). The aim of this study therefore was to explore nursing staff 's perceptions of end-of-life care, following the removal of the LCP. It is hoped that this study will facilitate further understanding of professionals working in end-of-life care, and of the challenges they face in the post-LCP era.
Staff at South Tees Hospitals use the Trust's ‘Last Days of Life’ care plan (South Tees Hospitals NHS Foundation Trust, 2014).
Methods
The COREQ framework 22 was utilised to describe the following methods section (Tong et al, 2007).
Ethical approval
Ethical approval for this research was granted by Teesside University School of Health and Social Care Research Ethics and Governance Committee (study number 203/16) and the Health Research Authority (reference number 17/HRA/3235).
Study design
This research employed a qualitative design, using an interpretive phenomenological methodology in accordance with Smith et al (2009). This approach aims to interpret individuals' descriptions of lived experiences within a specific context (Picton et al, 2017), whereby the role of the researcher is active in the determination of meaning (Converse, 2012; Abalos et al, 2016). This approach was employed as the notion of detachment from the data, as espoused by a descriptive approach, was deemed neither practicable, nor desirable in this instance because the first author is employed in palliative care. Furthermore, Smith et al (2009) suggested that such an interpretive approach allows for participants to provide rich and detailed accounts of their experiences. It is this emphasis on giving a voice to participants (Larkin and Thompson, 2011) that led to the adoption of this specific methodology.
Sampling
In order to be able to provide rich narrative accounts of the phenomenon of interest, a purposive sampling method (Palinkas et al, 2015) of nurses working within a community hospital setting in the North East of England was identified. Inclusion criteria were formulated around the key objects of the research (Craig and Smyth, 2007) and are highlighted in Table 1. To assist in enhancing credibility, and reduce the risk of coercion, nursing staff from a different community hospital base were identified as the potential sample. A ward manager acted as gatekeeper for this study and sent out an invitation letter and participant information sheet, containing the first researcher's contact details, to all 25 nurses. The research team had no involvement in the specific selection of participants and all participation was voluntary.
| Initial codes | Initial themes/sub themes | Refined themes |
|---|---|---|
| Positive |
Attitudes | Perceptions of the Liverpool Care Pathway (LCP) |
| Public perception |
Insider versus outsider views | |
| Training |
Environmental factors | Prevailing Issues |
| Postcode lottery |
Future concerns | |
| Psychological needs |
Wider considerations of care | Patients' and families' experiences |
| Pain |
Specific elements of care |
Data collection
Once informed consent was obtained, individual semi-structured interviews were used to collect data. These were used in order to allow for a degree of flexibility in data collection (Smith and Osbourne, 2008). To further facilitate this, an interview guide was developed in order to sustain a degree of focus within the interviews, thereby allowing for the research questions to be answered (Holloway and Wheeler, 2010). Interviews were conducted in a quiet room within the hospital, and lasted btween 45 and 60 minutes. All interviews were conducted between July 2017 and February 2018, by the first author (HC). Interviews were audio recorded, and transcribed verbatim.
Data analysis
In line with an interpretive phenomenological approach (Smith and Osbourne, 2008) and in order to allow for data to be contextualised within the field of existing literature, a theoretical approach to thematic analysis was employed, following the stages specified by Braun and Clarke (2006). All interviews were manually transcribed from the audio transcripts. To further enhance trustworthiness of the process, a reflective journal was kept (O'Leary, 2005; Silverman, 2011). Initial analysis of the data was conducted by the first author (HC). The emergent themes were then checked by the second author (PR) to determine that the interpretations were evident in the data and that no undue bias had manifested itself in their creation. Owing to the time constraints placed upon NHS staff and the potential for distress, and/or embarrassment at re-reading transcripts (Birt et al, 2016) participants were not asked to read the transcript of their interview.
Table 1 demonstrates the manner in which themes were developed: initial codes were highlighted following familiarisation with the data. Initial themes were then developed and reviewed, culminating in three refined themes.
Results
In total, 13 female registered nurses agreed to take part and were interviewed. In order to ensure anonymity, ages and years of experience were banded. The majority of those interviewed fell within the 26-40 age range (n=6), and had worked in their respective field for between 6 and 10 years (n=5).
Following data analysis three key themes were identified:
Theme one: perceptions of the LCP
Participants explored the LCP, its role within palliative care and the manner in which it was regarded. The perceived effectiveness of the pathway produced differing reactions, with some recalling the pathway in a positive light:
‘I personally preferred the LCP, it was more detailed than the current one in use [where] the medical assessment is placed in the notes and can be hard to find when you are in a rush, I think the verification of death should be integrated back into the nursing care plan.’
In contrast, others recognised the pathway had its place, but thought it needed updating in line with new evidence and changing patient needs:
‘I think that the LCP needed to be removed as a small minority of people were using it as a tick box exercise and not taking into account individual patient needs; the new tool is very thorough.’
The problems highlighted by the media provided a contrast to the ‘insider’ views of professionals working on the front line of palliative care, with some participants expressing the opinion that the removal of the LCP has not lead to a qualitative improvement in the delivery of palliative care:
‘I am aware of a lot of media portrayal and I can see how the public could have perceived the pathway to be a pathway of death, as the papers referred to it. However, having followed the pathway from being a student nurse, I never felt that. I felt that it has always considered care in a holistic way.’
The sentiments regarding media sensationalism are echoed in the following quote:
‘The review focused on a small minority of problems and did not consider all the success and patients who died having a pain-free dignified death. The press had a large part to play, I feel, in the sensationalism of the review, they focused on the negative aspect.’
It was also apparent that participants felt that there are still issues associated with the public perception of palliative care arising from media coverage of the LCP. And that these continue to have a negative impact on care delivered within the palliative setting:
‘I think it was sensationalised by the press and people just picked out certain issues and didn't actually understand the full process, therefore due to media pressure, [and a] misinformed public, the one [ie pathway/guidance on palliation] which replaced it is an exercise in only appeasing media/public, it does not/has not improved end-of-life care.’
Another participant said:
‘I feel there is still a negative stigma which needs to be worked through in order to advance palliative care in the future.’
Theme two: prevailing issues
If the removal of the LCP was intended to eliminate the problems perceived to be attributable to the pathway, then it is interesting to note participants' comments on the existing context of end-of-life care. The following indicated that prevailing circumstances support an environment within which ‘history could repeat itself’ (participant 8). A specific factor, noted by participants was the communication difficulties between members of the multidisciplinary team:
‘I think that where we can fall down sometimes is the way in which we communicate with GPs and sometimes it can be difficult to get them on board, when we feel a patient is entering the terminal phase … we need a more joined up way of working.’
Problems experienced with GPs and decisions on when to initiate end-of-life care may, therefore, be a significant challenge. This can be further exacerbated when the intervention of an out-of-hours (OOH) doctor is required. Fundamentally there is an issue in that the OOH doctor is unlikely to be familiar with the patient, which may create a delay in starting necessary palliative care:
‘In OOH when they don't know the patient they are a bit reluctant to start the Last Days of Life and they ask us to get them reviewed by their own GP.’
This in turn produced a scenario whereby:
‘GP's leave it too late to put the patient onto the Last Days of Life, when they have sooner opportunities.’
However, it would be premature to perceive such problems as emanating solely from procedural or availability issues. The following comment indicates a psychological dimension to this problem, which is perhaps emblematic of the existing climate:
‘I think they can be a delay in commencing the Last Days of Life due to the fear of being accused of killing patients or medics not explaining what end-of-life care is/entails to the patient and the relatives.’
The shift to regionally specific documentation, was central to participants' discussions. Views here were divided, some being in favour of the change:
‘The documentation has improved since they removed the LCP.’
Others were less favourable:
‘It is too long, it is just another tick-box exercise.’
Negativity towards the new documentation is further evident in the following statement:
‘The evaluation again is a tick box […] I feel the documentation is not fit for purpose.’
Added to this was a belief that deficiencies in training left some staff members lacking in the appropriate skills to implement end-of-life care in accordance with the new documentation:
‘I feel that there are competence and training gaps in some staff members due to lack of training since the new paperwork was introduced … I feel like there is still a long way to go in ensuring that the Last Days of Life paperwork does not end up providing the same outcomes as the LCP. I feel staff training is at the forefront of moving forward and the paperwork needs regularly updating to follow best guidance and advances in palliative care.’
Nonetheless, despite the challenges expressed, participants stated that care on the wards remains at a high standard since the removal of the LCP, with participants discussing their ‘passion for palliative care’ (participant 9) and the ‘rewarding nature of the job’ (participants 7 and 11).
Theme three: patients' and families' experiences
The role of families was discussed by all participants. All stated that families can have ‘as little or as much input as they deem needed’ (participant 10). The following statement elaborates on the impact families have in providing care at the end of life:
‘Families play a huge role in end-of-life care of their loved one, the patient and family are involved in all decision making … often when the patient becomes more unwell the family act as the advocate for the patient.’
In contrast, input from family members was also perceived as bringing about challenges to providing care, due to family conflicts and differing family dynamics:
‘Over the years I have witnessed difficult family circumstances and dynamics, which can hugely impact on the psychological needs of the patient, which can be challenging to manage.’
A significant issue highlighted by Neuberger et al (2013) was that family members perceived that they were not involved in care planning and decision-making. Participants were asked to discuss their observed differences between the LCP and Last Days of Life pathway in this area. The majority highlighted that before the withdrawal of the LCP relatives were less questioning regarding care provided and often took a ‘back seat’ (participant 2). Now they are more ‘engaged in care’ (participants 2, 5 and 9) more ‘questioning’ (participants 3, 5, 10 and 11) and more ‘informed’ (participants 1, 3, 5, 7, 10 and 11), which is further explored in the following comment:
‘Relatives are much more forthcoming and some demand to know what is going on and to be actively involved […] families do question the decisions we make.’
In conjunction with the first theme, perception of the LCP, the media's role in influencing perspectives can be seen in family members' views on the provision of opiates in end-of-life care. Most notably, this was in relation to the idea that opiates were used both excessively and as a means of abruptly terminating the caring process, as the following statement highlights:
‘[The] aim of palliative care is to ensure [a] pain-free dignified death, the use of morphine is used frequently to ensure this … the press stated that relatives felt like this was used to end life prematurely.’
A similarly emotive issue, and one further highlighted in both the Neuberger review (2013) and the mainstream media, was in relation to hydration and nutritional care. It was acknowledged, in a number of the interviews, that there has been a shift in this practice, and that subcutaneous fluids are now being prescribed more frequently as a means of comfort for the patient. Furthermore, this was seen as a direct result of families' awareness of issues surrounding hydration and nutrition in end-of-life care:
‘I think the family do challenge medical decisions, specifically hydration and nutrition, I feel more patients receive [subcutaneous] fluids than before.’
Conversely, the following statement indicates the importance in terms of recognised guidance with respect of these issues, and how, following the removal of the LCP, a state of ambiguity and uncertainty has evolved:
‘I feel the removal [of the LCP] has caused unease for families and staff alike and there still remains no national guidance, which has consequently turned palliative care into a postcode lottery.’
Discussion
This study aimed to gain insight and understanding into how frontline community palliative care nurses perceive the field of palliative care following the removal of the LCP. Both positive and negative views were highlighted throughout. Many participants acknowledged that the LCP had become a ‘tick-box exercise’ and had not been used to its full potential. Further comments, reflecting the views of Ramasamy Venkatasalu et al (2015), recognised the problems outlined by Neuberger et al (2013) highlighting broader problems in communication, lack of patient/family involvement, and lack of training. All participants agreed that media sensationalism, focusing on specific incidents rather than these wider issues, has had a profound impact on palliative care (Chinthapalli, 2013).
Although guidance has been provided by the DH (2002) and LACDP (2014) no nationally agreed replacement for the LCP has been produced allowing for confusion regarding roles and responsibilities. A resulting consequence of this was highlighted by participants who discussed notions of a postcode lottery establishing itself in palliative care. Specific to community care comes the added challenges of advocating for patients on evenings and weekends when OOH doctor assistance is required, often provided by locums who do not know the patient. Participants acknowledged that this can have an impact in beginning the palliative care pathway process as the autonomy nurses once had with the LCP has been removed.
Similar to the findings of Parry et al (2013) and Veerbeek et al (2008) there was acknowledgement of the pivotal role families play in care provision and planning in the last days of life. Despite Neuberger et al's (2013) views, family involvement and communication was apparent and productive both before and after the removal of the LCP. Some participants, however, recognised that family involvement can bring with it complexities due to differing family dynamics, which can produce conflict. This may have been a potential reason for the negativity surrounding the LCP, as a result of bereaved relatives and the emotions of loss (Parry et al, 2013).
The issue of morphine use in end-of-life care was still perceived as a source of much controversy (George et al, 2014). This perhaps highlights the ongoing stigma associated with palliative care in general, indicating further work needs to be done in raising awareness of care in the last days of life. Undeniably, this disconnect between practice and public perception is a fact further exacerbated by sensationalist, and at times politically motivated, reporting of clinical issues in the mainstream press.
Limitations
This study is solely from the perspective of a small sample of nurses working in palliative care in a single Trust. The views of other groups both working in and affected by the issues discussed are absent. No male nurses took part in the study, although this may be a reflection of their under-representation within the Trust. Furthermore, the research took place in one geographical location and regional variances in end-of-life care may produce widely differing experiences. Nonetheless, the participants have highlighted significant issues facing staff in this field of health care, and indeed of staff in health care in general.
Recommendations for further research
Further research is needed into the area of palliative care and specific pathways relating to the last days of life. The focus should be on obtaining a larger sample, of mixed multidisciplinary views to ascertain how the media, and public perceptions, continue to shape the dynamics of end-of-life care.
Conclusion
This study provides an insight into the prevailing climate within end-of-life care. What is clear from the views expressed is that the withdrawal of the LCP has not been a panacea for the pathway's perceived failings. Furthermore, the nature of the new documentation and the lack of an existing gold standard precipitates the potential for fragmented and inconsistent levels of care within the palliative sector. The way in which the LCP was removed from practice indicates that the non-expert media played a negative role, which further inhibited the care process. In this respect it is important that ‘insider’ voices are also heard in order to educate and also redress disinformation. Similarly, broader, persisting, contextual challenges facing health-care staff need to be addressed in order to prevent a repeat of the issues that led to the removal of the LCP.