INTRODUCTION
People with dementia in the last phase of life often suffer from such burdensome symptoms as pain and shortness of breath (van der Steen, Reference van der Steen2010; Hendriks et al., Reference Hendriks, Smalbrugge and Galindo-Garre2015). They may not verbalize complaints or express them differently, and recognizing such symptoms may be even more difficult in acute illness or during the dying phase (Robinson et al., Reference Robinson, Eccleston and Annear2014; Davies et al., Reference Davies, Manthorpe and Sampson2015; Waterman et al., Reference Waterman, Denton and Minton2016). Anticipating and identifying symptoms are important for timely symptom management. Pathways and observational tools such as the Liverpool Care Pathway (LCP) may help to monitor symptom burden and guide end-of-life care (Jack et al., Reference Jack, Gambles and Murphy2003; Veerbeek et al., Reference Veerbeek, van Zuylen and Swart2008; Mayland et al., Reference Mayland, Williams and Addington-Hall2013). However, there is very little evidence for the effectiveness of end-of-life pathways in relieving symptoms (Brännström et al., Reference Brännström, Fürst and Tishelman2016; Chan & Webster, Reference Chan and Webster2016). Further, when mistaken for a protocol, it may divert the caregiver's attention from a person-centered approach (Neuberger et al., Reference Neuberger, Guthrie and Aaronovitch2013; Sleeman & Collis, Reference Sleeman and Collis2013; Ramasamy Venkatasalu et al., Reference Ramasamy Venkatasalu, Whiting and Cairnduff2015).
In the United Kingdom (UK), the LCP has received substantial criticism and was phased out as of July of 2014 (Neuberger et al., Reference Neuberger, Guthrie and Aaronovitch2013). In some countries, including the Netherlands, the LCP is still being used (Veerbeek et al., Reference Veerbeek, van Zuylen and Swart2008; Clark et al., Reference Clark, Sheward and Marshall2012; Di Leo et al., Reference Di Leo, Romoli and Higginson2015). It was initially implemented in the Netherlands through an interventional study which took place between 2003 and 2006 that included two hospitals, two nursing homes, and two homecare organizations (Veerbeek et al., Reference Veerbeek, van Zuylen and Swart2008). Subsequently, it has been further disseminated through palliative care networks and the Integral Cancer Center of the Netherlands (Integraal Kankercentrum Nederland [IKNL]). By 2012, 119 institutes, including 35 nursing homes, were working with the LCP (Geijteman et al. Reference Geijteman, Dekkers and van Zuylen2013). The Dutch translation, “Zorgpad voor de Stervensfase,” was based on version four of the LCP (Swart et al., Reference Swart, van Veluw and Koningswoud2003). In the UK, separate goals have been formulated for continuation of clinically assisted nutrition and hydration, while in the Dutch version these goals were included under the evaluation of actions and discontinuation of unnecessary treatments. Other goals were retained in the translation (Swart et al., Reference Swart, van Veluw and Koningswoud2003). There are three Dutch versions of the LCP—one for hospitals, one for homecare, and one for nursing homes—that differ only in the use of the terms “patient,” “client,” or “resident,” respectively, to refer to the dying person.
In response to the critiques included in the Neuberger report regarding the use of the LCP in the UK, the two main institutes that collaborated in the implementation process and continue to promote the LCP (the IKNL and the Erasmus Medical Centre in Rotterdam) have issued a statement, declaring that “We do not recognize the serious criticism of the LCP in England in the Dutch practice” (Erasmus Medical Center, 2017). This argument is substantiated by referring to an initial study of the LCP in the Netherlands that evaluated its effects as predominantly positive (Veerbeek et al., Reference Veerbeek, van Zuylen and Swart2008). However, this has been to date the only study on the LCP in the Netherlands, and to our knowledge no additional research was conducted in the Netherlands after the criticisms were published in the UK. As such, while the IKNL and Erasmus Medical Center remain convinced of its benefits, there has been a considerable gap in our knowledge about the ways in which the LCP has been functioning and how it has been experienced by caregivers and family members. In addition, to our knowledge, there are no studies that have addressed the LCP specifically in dementia care.
In the present study, we ask the following: How do professional caregivers in a Dutch nursing home experience working with the LCP in the context of dementia? Considering that one of the aims of the LCP is to support caregivers in providing care at the end of life, we are interested in evaluating to what extent they actually consider the LCP as supportive. We thus address the usefulness of the LCP in the specific context of nursing home care of people with dementia at the end of life. Our ethnographic approach enabled us to address both professional caregivers' experiences and follow the use of the LCP in practice. In examining the challenges and benefits of the LCP in the daily practice of long-term care, we also address how the LCP relates to the particularities of dementia.
METHODS
Design
The ethnographic study was conducted in dementia care units at a Dutch nursing home between March and June of 2015. This work was part of a larger ethnographic study about what constitutes good care at the end of life. N.L.D. used participant observation, and four cases of LCP use were closely followed. N.L.D. conducted 25 semistructured interviews with professional caregivers that were guided by their experiences and the challenges and benefits involved in working with the LCP in the context of dementia in a nursing home setting. The interviews lasted between 25 and 60 minutes.
Setting and Participants
Use of the LCP has not been mandated in the Netherlands. The nursing home selected for our study was situated in a rural southern area of the Netherlands, and the staff there had been working with it since 2005. There were 11 psychogeriatric small-scale living units, each with eight residents, almost all afflicted with dementia.
To account for different understandings and experiences of working with the LCP, interviews were held with all four specialist elderly care physicians, the nurse practitioner, and 20 members of the nursing staff.
Transcripts and Analysis
The interviews were focused on discussing how the LCP was perceived by professional caregivers and allowed them to reflect upon it, while participant observation allowed N.L.D. to collect data on the actual use of the LCP in practice. The interviews were recorded, transcribed verbatim, and coded by N.L.D. (a medical anthropologist). A sample of the transcripts was analyzed independently by M.G. (a medical anthropologist) and J.v.d.S. (an epidemiologist) with open coding. Observations were recorded in detail in fieldnotes by N.L.D. on the same day. These descriptions were then shared with the other two researchers, who read them and came together for joint discussion. Throughout data collection and analysis, the insights from these observations were compared with the findings from the interviews, and discrepancies were discussed. Employing a grounded-theory (Glaser & Strauss, Reference Glaser and Strauss1967) approach, in which the literature was consulted after data collection, allowed us to reflect on the collected data without being influenced a priori by categories from the literature.
Ethics
The study was approved by the Amsterdam Institute for Social Science's Research Ethical Advisory Board of the University of Amsterdam. All staff and family members were informed about the research and of the presence of N.L.D. in the nursing home.
RESULTS
We identified four themes in the reports of professional caregivers: (1) the LCP as a communication tool; (2) systematic symptom management; (3) the complexity of documentation, and (4) the limitations of working with the LCP in practice.
Communication at the End of Life
Beginning an LCP was understood as providing a point of reference to communicate that the end of the life of the person with dementia was near:
I think one of the most important things is often that it [the LCP] becomes a marking point, as in we are now entering the terminal phase. (elderly care physician)
As such, it is not that the LCP assisted professional caregivers in identifying the end of life, but once an LCP had been begun, it was taken as a sign that the person was dying. This “marking point” was relevant on four levels. First, for nursing staff and elderly care physicians to reevaluate treatment and start terminal care:
As soon as it is agreed to start the LCP, we all make a switch and focus on the checklist. I think this provides clarity. […] To have a starting point, this is what we agreed upon: these medicines we keep and those are stopped. (nursing staff)
Second, nursing staff stated that the LCP is relevant for communication with family members, as it raises awareness that the person with dementia is dying:
I think that for certain family members it [the LCP] provides heightened awareness that things will not get better anymore. (nursing staff)
Third, as a communication tool between the disciplines involved:
[The LCP] helps to maintain continuity between and among all disciplines—that we are all on the same page. (elderly care physician)
Fourth, as a communication tool between shifts:
After two days off, you can go through the previous pages. Also from the nightshift, you do get information during the change of shifts, but it is always good to be able to check. (nursing staff)
Most professional caregivers indicated that the LCP turns the focus toward a common goal of comfort. The underlying assumption is a shared understanding of the care that should be prioritized during this phase.
In practice, N.L.D. observed that each unit used and communicated the LCP differently. In some units, the LCP was placed on the resident's nightstand and openly discussed with family members. In other units, the LCP was kept in the nurse's office, and though nursing staff confirmed that family members could always access it, family members were not always made aware of its use.
Providing Structure
None of the professional caregivers indicated that they experienced an improvement in communication with residents due to the LCP. While not contributing to interpreting the condition of a dying resident, the LCP checklist did provide a sense of structure and control and strengthened caregivers in the conviction that they had provided all the care that was needed:
I believe only the checklist adds value, as a reminder. Did I think of everything? (nursing staff)
So that you don't forget anything […] since often we are not able to ask the residents themselves here. (nursing staff)
Nursing staff saw the checklist as a comprehensive tool that clearly marks all the focus points relevant for end-of-life care. Everyday life in the nursing home may be hectic, in which case the LCP was also considered as an aid to maintain continuity through regular monitoring requirements. As one nursing staff member reported:
Actually, I find it easy, especially when the group is busy. At least you have fixed moments to monitor. (nursing staff)
Professional caregivers also reported that the LCP stimulated them to prioritize the care goals listed in the pathway and observe the corresponding symptoms with more attention:
You do look more consciously at a person, so as to see if they might suffer from a full bladder, nausea, or pain. And you do have the checklist for yourself to see: “Oh, pain, medication, is it needed? Why?” I do think it is a nice system. It just helps me to look more precisely. (nursing staff)
Complexity of Documentation
N.L.D. observed that it was not always clear when a checkbox could be ticked off. For example, one question in the LCP asks if the available facilities have been explained to the family. With several family members visiting, this evoked uncertainty among the nursing staff about when to tick the box. Should all family members have had an explanation or only the contact person? In practice, even if information was provided, family members would often inquire about the same issue multiple times. Since the LCP only offers a checkbox for “accomplished,” nursing staff at times assumed that the issue was resolved while this was still unclear to family members. This illustrates how in practice certain aspects of caregiving cannot simply be checked off, indicating the limits of the LCP in grasping the complexity of caregiving.
It was further observed that part one of the LCP was often not filled out, which was considered to be the responsibility of the elderly care physician. This part of the form requires information (e.g., about non-resuscitation procedures) that had already been documented in the regular individual care record, which is established upon admission to the nursing home as a result of discussions between family members and the elderly care physician. Filling out part one of the LCP is thus experienced as duplication of work.
Part two, which comprises a checklist for the nursing staff, was usually well-documented, but not always at the prescribed times. This can be attributed to the unpredictability of everyday care, where nursing staff is needed on the spot. Not documenting care in the LCP at the set times did not mean that the nursing staff was not involved with the dying person. It was observed that nursing staff focused on providing care and would document this in the LCP later, in some cases at the end of the day.
Part three requires information concerning the moment of death, which is also requested in forms intended for the coroner, so that this final section of the LCP is also perceived as a duplication of work. It is also considered pointless, since after the resident has died the LCP is filed away without any further usage.
Further, the uncertain trajectory of dementia makes it difficult to establish exactly when to initiate an LCP:
Sometimes we think yes, and the doctor doesn't think so. And then you start it, and then you can stop it. We once had a woman for whom it [the LCP] started three times. How then to explain to the family that this time it's for real? And so the fourth time we were, like, let's wait a bit. But then we were too late. (nursing staff)
Both elderly care physicians and nursing staff questioned the usefulness of the LCP in situations where a resident died suddenly or after a very short time spent in the sickbed. Time is then lost in filling out the LCP, without the benefit of regular monitoring and reporting:
I find it difficult. When do you start an LCP? Normally, you can see it coming when someone will die within the next three days, and then you start it. But like this morning, we started it. She declined very fast and died. Should I, in such case, start an LCP? Because now I am still not done filling it all out. (nursing staff)
Beginning an LCP is generally experienced as time-consuming. Both nursing staff and elderly care physicians reported that the LCP is too extensive. Nursing staff specifically addressed the amount of paperwork involved. According to nursing staff, this is time that could otherwise be spent on caring for residents. Professional caregivers also recounted how the LCP form has a confusing design, with the checklist and reporting appearing in separate sections:
You see, you have to fill out what happens [and] at what time. A is achieved, and V is variance. When V, you have to explain the reason why, and this part is at the end [of the LCP]. It would be more convenient to have it on the same page. Now you have to browse through it. (nursing staff)
The LCP is not a tool that nursing staff use on a daily basis, considering that death sometimes occurs at irregular intervals, while at other times no deaths happen for a number of months among the small number of eight residents the nursing staff cared for in the units. In cases where the LCP had not been used for a while, nursing staff indicated that they had to familiarize themselves with it all over again:
When it has been a while since you've worked with it, I always find it hard to get into it again. Like, how does it work, and what am I supposed to do again? (nursing staff)
Limitations in Practical Use
In general, it was observed that caregiving at the end of life for people with dementia was less guided by the LCP checklist than by the care needs that emerged from the actual situation. Professional caregivers reported that they would provide the needed care, whether or not they had a checklist:
I do not see the added value [of the LCP]. Normally, I would also see things. If someone is anxious, I undertake action whether or not I have those forms. You just do it. It does not matter. I mean, you also do that in the period when they are not in the dying phase. If you notice there is something with a resident, you take action. (nursing staff)
One elderly care physician even stated that end-of-life care is at the core of nursing home care. Nursing staff further made clear that they would enter the room of the dying person more regularly than what was recorded on the LCP:
I think that if we would not have the LCP in the small-scale units, that we would take a look very often as well. Because even with the LCP we enter the room every half hour: is someone still comfortable, isn't the sun in their face? Yes, we so often just walk in, because it is such a small entity, and I find that very pleasant. Sometimes you care for someone for years and they become, I wouldn't say family, but they become sort of your own. (nursing staff)
When symptoms were observed, nursing staff would not wait until the scheduled checkup time but would act immediately:
On a moment like that, you act on the spot. Short of breath, or whatever, pain, you call a physician and make sure everything is all right. It's little things. But is she sweating under a blanket? Cover her with a sheet instead. That goes without saying. You do not need a list for that. (nursing staff)
Observations in the nursing home confirmed that nursing staff monitored residents on a more regular basis than what is required by the LCP. In this way, immediate care needs were prioritized over the LCP checklist.
It was also observed that nursing staff would work overtime when the situation required. For example, one nursing staff member who had lost her father a couple of months before found it difficult to support and care for a dying resident. She was starting her shift and was in tears in the kitchen, upon which a colleague whose shift had ended offered to stay with her. In this way, she was able to continue everyday care for the other residents while her colleague could focus on the dying resident. Again, this indicates that nursing home staff members were and need to be responsive to the situation, and that situations can demand more than just the symptom management addressed in the LCP.
DISCUSSION
The LCP is both useful and at times redundant in the context of caregiving at the end of life for people with dementia in a nursing home setting, and further consideration is needed about whether and how it can be improved to become an more optimal tool for this context.
The idea of having all information concerning a resident—including the medical treatment plan, the resident's preferences, agreements made with family members, provided care, and bereavement care—in a single document is valuable. However, the LCP causes duplication of work because much of this information is already documented in the regular care record and the official documents on file with the nursing home. There was a consensus among professional caregivers that using the LCP was unnecessarily complex and did not fit well within the nursing home setting or in the context of dementia. While most professional caregivers admitted seeing both positive and negative aspects of the LCP, we did not find patterns in the ways in which the different professions or units valued the LCP as useful.
As mentioned above, one of the criticisms on the LCP in the UK has been that it was often used as a protocol or “tick-box exercise” (Neuberger et al., Reference Neuberger, Guthrie and Aaronovitch2013). We recognize that in the Dutch context it was employed as a checklist to the extent that for some professional caregivers the LCP was mostly a bureaucratic obligation. For others, it was mainly a tool that served as a reminder of symptoms to look for. In line with Gambles et al. (Reference Gambles, Stirzaker and Jack2006) and Duffy et al. (Reference Duffy, Payne and Timmins2011), we found that, in practice, nursing staff acted upon the care needs that emerged in the moment, which means that the person with dementia, rather than the checklist, was the point of reference in everyday care.
Similar to Jack et al. (Reference Jack, Gambles and Murphy2003), our study observed that the LCP was appreciated by nursing staff to the extent that it gave them a sense of having done everything within their power to provide comfort to their residents. By structuring caregiving, the LCP provides a sense of control in the uncertain trajectory of dying with dementia. Providing comfort at the end of life in the context of dementia can be complicated, as residents with dementia often cannot verbalize their discomfort or pain (even if nonverbal communication is still possible). Within this challenging context, the LCP directs a professional caregiver's attention toward the listed symptoms, but it does not provide nursing staff with the means to promote better evaluation. This remains a subjective task for professional caregivers.
Our results show that, as the required and provided care are documented in the LCP, it may also be considered a means of communication between different disciplines and sometimes family members (Jack et al., Reference Jack, Gambles and Murphy2003; Clark et al., Reference Clark, Sheward and Marshall2012), in this way contributing to continuity of care (Gambles et al., Reference Gambles, Stirzaker and Jack2006). Specifically, beginning an LCP means marking and communicating the onset of the dying phase. While it does not support professional caregivers in identifying the end of life itself, once an LCP is begun it invokes awareness that the resident is dying. In line with Swart et al. (Reference Swart, van Veluw and Koningswoud2003), we consider this one of the benefits of the LCP. As such, the LCP offers a sense of certainty amid the uncertain trajectory of dying with dementia. However, because the trajectory of dementia is hard to predict (van der Steen et al., Reference van der Steen, Heymans and Steyerberg2011; Brown et al., Reference Brown, Sampson and Jones2013; Davies et al., Reference Davies, Manthorpe and Sampson2015), it is also difficult to accurately estimate when to begin an LCP. This may also be the case with other populations (Watson et al., Reference Watson, Hockley and Dewar2006; George et al., Reference George, Martin and Robinson2014; Di Leo et al., Reference Di Leo, Romoli and Higginson2015). If an LCP is stopped because the resident improves, this sense of certainty and control turns out to be misleading. When dying proceeds rapidly, professional caregivers still spend a lot of time filling out the LCP, time that would be better spent caring for the dying resident (Di Leo et al., Reference Di Leo, Romoli and Higginson2015). In the context of dementia, the LCP may have benefits, but this depends on the individual trajectory of the dying process.
Overall, we agree with George et al. (Reference George, Martin and Robinson2014) that underlying the LCP there is the assumption that “human complexity is reducible” (p. 4). We find that the LCP fails to address the complexities of caregiving in the specific context of dementia care in nursing homes, which above all involves paying attention to the resident's needs and thus knowing how to achieve comfort for that specific person. We should be aware that the efficient use of such tools as the LCP is not being confused with the need for responsive and person-centered care. Therefore, we should not cease to consider, in further development of the LCP, whether and how its benefits as a reminder and a communication tool are balanced by the burdens of its use (e.g., the amount of work it requires).
LIMITATIONS AND STRENGTHS OF THE STUDY
Considering that our study was undertaken in a single nursing home, we did not aim to propose generalizations on the use of the LCP in the Dutch context or in nursing home settings, but we intended to highlight the possible complexities of its use in practice.
The presence of N.L.D. in the nursing home can be considered both a strength and a weakness of our study. On the one hand, the researcher's presence may have influenced informants to adapt their conduct due to their being aware of the research focus. On the other hand, it allowed the researcher to directly address and observe actual application of the LCP in practice. The combination of observations, interviews, and informal conversations allowed the authors to analyze both how professional caregivers expressed their experiences of the LCP and how it was used in practice.
RECOMMENDATIONS FOR PRACTICE AND RESEARCH
If nursing home staff wish to use the LCP, then its usability in everyday caregiving should be enhanced. Along these lines, we find that the specific context of implementation of the LCP should be taken into account (Watson et al., Reference Watson, Hockley and Dewar2006). For example, the requirement to check on a dying resident every four hours may be helpful in some settings, but professional caregivers in a nursing home unit with only eight residents usually walk in and out of rooms much more often, making such a schedule arbitrary, if not redundant. Accordingly, a pathway should be developed that is more compact (Ramasamy Venkatasalu et al., Reference Ramasamy Venkatasalu, Whiting and Cairnduff2015) and flexible, one that can be included in the regular care record, instead of a detached and overly extensive document, so as to better fit the particularities of the nursing home setting. This effort could be combined with existing symptom-assessment tools for people with dementia (Lichtner et al., Reference Lichtner, Dowding and Esterhuizen2014; Ellis-Smith et al., Reference Ellis-Smith, Evans and Bone2016). Rather than having a system in which boxes need to be checked, and thus considered done, it would be better to have reminders and guidance for observing symptoms that allow for uncertainties and ambiguities that change with the situation of the dying person. In addition, the possibilities for nursing staff to refresh their knowledge of working with the LCP should be offered (Gambles et al., Reference Gambles, Stirzaker and Jack2006; Brännström et al., Reference Brännström, Fürst and Tishelman2016).
For further research, we recommend studying how family members experience the LCP in end-of-life care. It would also be interesting to examine implementation and the effects of other end-of-life tools to compare findings.
CONCLUSIONS
The LCP can be valuable, but also at times redundant, in end-of-life care in the context of dementia in a nursing home setting. The LCP was not employed as a rigid structure, as it was observed that nursing staff acted upon the care needs of dying residents rather than following the LCP checklist. From working with the LCP, particularly the checklist, nursing staff derived a recognition that care was well provided and that none of the required tasks were overlooked. In this way, the LCP reassures by establishing a concrete framework of symptoms upon which to focus. In this sense, nursing staff experienced working with the LCP as supportive. However, there should be an awareness of its limitations in practical care. In its current form, the LCP is unnecessarily complex and does not fit well with the nursing home setting or the context of dementia.
ACKNOWLEDGMENTS
We thank Dr. Lia van Zuylen for informing us about the implementation of the LCP in the Netherlands. We are grateful to the nursing home for participating in our study, and to the professional care workers who contributed their time and knowledge and made our study possible. We also thank the anonymous reviewer for their thorough reading of an earlier version of this article and their constructive feedback.
DISCLOSURES
The authors hereby declare that they have no conflicts of interest to disclose.
FUNDING
Our research project was funded by the Dutch Ministry of Health, Cordaan, and the University of Amsterdam.
