The case study involved an 85-year-old gentleman with acutely increased oxygen requirements. He had a raised respiratory rate—on a background of pneumonia caused by COVID-19—and advanced dementia. Additionally, he was experiencing dysphagia and, regarding feeding, was deemed ‘at risk’ of aspiration following assessment from the speech and language therapist. On review by the advanced care practitioner (ACP), he was found to have developed new coarse crackles to the right side of his chest on auscultation. He was awaiting fast track discharge to a nursing home for palliation; and if his condition deteriorated, a decision was given to commence end-of-life care (EOLC).
The ACP proceeded to organise a portable chest X-ray and blood tests, with a view to commence antibiotics for suspected aspiration pneumonia. This was undertaken on the rationale that there might have been a reversible condition that could have been treated. If found, the parent team would decide whether treatment should be continued during daylight hours.
However, after ordering the investigations, the ACP began to doubt whether they were the correct course of action. They thought that EOLC should have been initiated, as it had been documented and discussed with the patient's next of kin. Advice was sought from the medical registrar on call, who advised to continue with the investigations but not to commence antibiotic treatment. The ACP telephoned the patient's daughter and informed her, as next of kin, about her father's deterioration in clinical condition and that additional investigations were being conducted. By the morning, the patient was on maximum oxygen therapy and the decision was made for EOLC to be commenced. The ACP again contacted the patient's daughter and informed her of the decision.
End-of-life care
EOLC has undergone significant changes over the past century. Palliative care and EOLC first emerged in the 1960s, with the introduction of hospice care programmes, although palliative care was not officially defined by the World Health Organization (WHO) until 1990 (Seymour and Clark, 2018). Currently, half of the annual deaths in the UK occur in an acute hospital setting (Office for Health Improvement and Disparities (OHID), 2022). Despite this, induction and communication around EOLC remain suboptimal (Bergenholtz et al, 2020).
This is reflected in the incidence of advanced care directives for individuals with dementia, which is estimated to be just 3–39% worldwide (Sellars et al, 2019). Although dementia is widely accepted as being a progressive and terminal disease, there remains a reluctance to discuss future medical plans and preferences for EOLC. Consequently, people with dementia have been shown to receive inadequate EOLC, including excessively aggressive treatments and poor pain and symptom management (Sellars et al, 2019).
Conversations about death and dying
A possible explanation for the lack of the conversation around death could be due to changes in societal and cultural perceptions since the 20th century. Historically, death was a more common occurrence and families would unite to provide care and support for their dying relatives within their own homes, including conducting their last rites (Jones, 2020). With the modern advancement of medicine and extended life expectancy, death is now often experienced for the first time by individuals as an adult, with the vast majority of EOLC now being performed by healthcare professionals and funeral directors (Jones, 2020). This has led to a generalised ignorance of the dying process and what to expect during the last days and hours of life. Death and dying has become somewhat of a taboo subject in modern times (Bergenholtz et al, 2020), which further contributes to the avoidance of discussion around the subject. Attempts are being made to address this by way of initiatives such as ‘death cafés’ (Richards et al, 2020), which aim to re-educate and normalise death as a natural part of life, rather than a failure of medicine (Jones, 2020).
Liverpool Care Pathway
A significant breakthrough in palliative care came in the latter half of the 20th century with the development of the Liverpool Care Pathway (LCP). The LCP was devised as a tool to enable hospice-level care to be delivered to all patients who were in the terminal phase of illness, regardless of their location (Jones, 2020); it has since become a recognised method of delivering EOLC to patients (Seymour and Clark, 2018). It was the product of a collaboration between the Royal Liverpool University Hospital and the Marie Curie Palliative Care Institute in the early part of the 1990s—a time when the introduction of integrated care pathways was gaining momentum across the NHS (Jones, 2020). The LCP was intended to optimise the care received by patients in the last hours and days of life by ways of defined goals to be achieved, centred around symptom control, communication and the withdrawal of any unnecessary investigations or treatment (Seymour and Clark, 2018). It was primarily well received and became widely recognised as the gold standard of practice for EOLC across the NHS (Jones, 2020). Furthermore, it went on to receive international acclaim, with pilot schemes witnessed in Argentina, Italy, India and The Netherlands (Jones, 2020).
However, the LCP later became the subject of widespread criticism in social media and the press, who accused the LCP of being a veneer for euthanasia within the NHS. Initial concerns were raised by a geriatrician, Gillian Craig (2008), who published an article warning of the dangers of prolonged sedation becoming accepted as normal practice on the LCP. Other studies followed, which criticised the practice of routine withholding of hydration and nutritional support in these sedated patients (Jones, 2020).
These publications echoed wider concerns within the healthcare sector of the general application of the specialism of palliative care at scale and leaving little room for individualised care planning (Seymour and Clark, 2018). This was then followed by a social media campaign of distressed relatives, who believed that their loved ones had been essentially starved and sedated to death (Jones, 2020). The accompanying negative press attention resulted in the stigmatisation of the LCP and, despite a wealth of positive patient and staff experiences, it seemed that public confidence was lost and the LCP could no longer effectively function within the NHS. An independent review was launched and, following the publication of the report: ‘More care less pathway, a review of the Liverpool Care Pathway’, the LCP was withdrawn within 6 months (Neuberger et al, 2013).
While the review stated that the panel believed that the LCP did reflect the fundamental principles to provide compassionate, high-quality care for patients in the final days to hours of life, they did find a number of shortcomings in its implementation. Among the main points of concern identified were a lack of communication between healthcare professionals and patients and their relatives, with many accounts of relatives coming in to hospital to find that all care had been withdrawn from their loved one without warning; inappropriate routine use of sedation and opioids, seen as generically synonymous with the LCP; hydration and nutrition withheld routinely rather than on an individual case basis; and a lack of training and supervision for staff implementing the pathway (Neuberger et al, 2013).
The LCP remains a source of controversy; however, it is widely accepted that the care pathway itself was not at fault, but more the indiscriminate implementation and lack of education for both staff and the general public (Seymour and Clark, 2018). Despite having 12 reviews and alterations during its time in use, the LCP was criticised for not using any quality, peer-reviewed evidence on which to base its framework (Neuberger et al, 2013).
Conversely, this was contradicted by studies held abroad, which countered that the review of the LCP itself could be considered unscientific and too reliant on anecdotal evidence (Seymour and Clark, 2018), and that the failings of the LCP were more a reflection of wider deficiencies within the healthcare system, rather than the tool itself (Regnard, 2014). However, faced with a lack of faith from the public, it was fruitless to persevere with the use of the LCP, as it would likely cause more distress than it alleviated.
New guidelines were produced by the National Institute for Health and Care Excellence (NICE) to advise on caring for adults nearing the end of their life, which arguably follow much of the same principles as the LCP (Jones, 2020). The guidelines addressed the recommendations from the Neuberger Review and give prominence to the recognition of adults approaching the final days of life, shared decision-making, effective communication and providing individualised care (NICE, 2015). It also goes on to give explicit advice on nutrition and hydration, as well as pharmacological management of symptoms (NICE, 2015).
A possible legacy of the Neuberger Review and subsequent withdrawal of the LCP has been a reluctance in healthcare professionals to have proactive discussions with patients and their relatives regarding EOLC, as well as trepidation at its commencement. Reactions to the withdrawal of the LCP from senior clinicians in peer-reviewed journals were largely that of frustration and disappointment, with concerns raised that the move would undo years of progression for care of the dying (Regnard, 2014). Anecdotally, the author perceived this as the case in the aftermath of the LCP being withdrawn, in that significantly fewer patients appeared to be recognised as dying in the ward environment, and EOLC was not initiated until the advanced stages of the dying process.
This is reflected in the ACP's experience of difficult conversations with patient relatives following the withdrawal of the LCP, whereby families felt that the medical team were ‘giving up’ and attempting to hasten death; they saw these factors as contributing factors to the hesitation by the ACP to commence EOLC.
Difficulty in commencing end-of-life care
The concept of previous experience affecting healthcare professionals' engagement in the introduction of EOLC is supported by Watson's Theory of Human Caring (1979), which acknowledges the subjective experiences of the nurse, as well as the service user and their families within the definition of caring (Murali, 2019). The theoretical model aligns with postmodernism philosophy, which states that reality is not solely an objective fact, but rather a combination of variable definitions within the context and meaning of a given event (Murali, 2019).
When applied to EOLC, it demonstrates how a uniform approach is inappropriate, given the vast discrepancies in cultural, spiritual, religious and personal beliefs of individuals and their families. It also highlights that such beliefs are also inherent in healthcare professionals and can impact on the quality of discussion and communication held between the patient and their next of kin, which has been proven to be vital for successful EOLC (Neuberger et al, 2013). Similarly, it can be deduced that the personal experiences of practitioners of EOLC can affect their motivation to hold such discussions (Murali, 2019).
Arguably, the most significant factor to contribute to the ambiguity around starting EOLC has been the patient's lack of familiarity with the process and ‘cross coverage’. The cross-coverage of patients, which refers to the management of patients during nightshifts of whom practitioners have little or no previous awareness, has been described as a practice that presents unique challenges, requiring a distinctive skillset (Heidemann et al, 2019). Issues include assessing and care planning for inpatients previously unknown to the practitioner, communicating with unfamiliar healthcare professionals, the prioritisation of workload and determining level of assessment required (Hatala and Goldszmidt, 2019).
It is reasonable that a decision of magnitude, such as the withdrawal of active treatment in a patient, should be cause for internal deliberation in the practitioner, especially out of hours where there are generally fewer resources and reduced supervision (Martindale et al, 2019). Studies related to cross coverage are limited. There are no formal training programmes dedicated to the practice and no consensus to determine core activities (Hatala and Goldszmidt, 2019).
As a result, it is at the discretion of individual practitioners to use clinical judgement in any given situation, which has the potential to differ from that of their colleagues.
In the context of this case patient, the decision-making process by the ACP could be viewed by using the approach detailed in Watson's theory of human caring (Murali, 2019). The ACP first gained experience of EOLC in their previous role as a registered nurse, when they worked on a ward caring for haematology and oncology patients. There was frequent exposure to EOLC and constant opportunities to build relationships with family members. The ACP then transferred to work as a critical care outreach sister, whereby the topic of difficult conversations changed to whether a patient might be appropriate for admission to the intensive care unit. EOLC no longer featured as a routine part of the role and remained this way for over 10 years. Following the transition of the patient to to an ACP, there was limited opportunity to hone the skill of EOLC communication.
In the first instance, the ACP investigated the deterioration of the patient, with the intention to treat any reversible causes; in this context, the parent team would have decided on further management the following day. This approach was supported by the NICE guidelines, which state that the decision should ideally be made during daylight hours (NICE, 2015). However, the guidelines also advise to avoid any investigations that are unlikely to affect care (NICE, 2015).
Deteriorating versus dying
Following the initiation of this management plan, the ACP began to doubt whether it was the correct course of action. Advice was then sought from the medical registrar, which is recommended when there is ambiguity as to whether the patient is entering their final hours of life (NICE, 2015). This was the case here, as the patient remained alert and cardiovascularly stable, despite his exponential increase in oxygen requirements.
Medical advancement has resulted in a changing epidemiology of dying, which means that patients with advanced age face a prolonged period of gradual decline, frailty and chronic comorbidity. This process is at odds with conventional hospice EOLC care models, which were based on a patient's expected rapid deterioration into the dying phase with a clear transition point (Seymour and Clark, 2018). For this reason, it is not always easy to identify when an individual is dying versus deteriorating (NICE, 2015). It could be argued that in the case of the patient in this case study, they were not displaying objective signs of nearing death, such as Cheyne-Stokes breathing or agitation (NICE, 2015); as a result, the delaying of EOLC until the parent team could review the following day would be reasonable. However, in the experience of the ACP, the increase in oxygen dependency in the context of COVID-19 pneumonia was a strong indicator of impending fatality (Xie et al, 2020).
A possible influencing factor could have been the anticipation of contacting the patient's relative late at night. Due to cross coverage, the ACP was unfamiliar with the patient and had not had the opportunity to build a rapport with the relatives that would usually be the case in a ward setting; this issue had been exacerbated by COVID-19, which had restricted visitors and healthcare professionals' capacity to converse with relatives.
A positive professional-patient relationship has been identified as being paramount in successful implementation of EOLC (Finotto et al, 2020). The idea of contacting a patient's relative in the middle of the night with bad news, when they are not known to the healthcare professional, and to include the fact that investigations had been carried out that may have contradicted the previously agreed plan, was not an attractive prospect.
Nevertheless, the ACP had a duty of honesty to inform the patient's daughter of the events unfolding with her father overnight (Shekar and Brennan, 2020). The patient's daughter was understanding and appreciative of the telephone call.
The ACP faced various uncertainties in the identified scenario. Unfamiliarity with the patient led the ACP to question what the patient's baseline had been. However, the nursing staff caring for him at the time were not permanent members of staff and so were also unknown to the patient. There was also hesitancy as to what the limits of the ACP role were in relation to commenced EOLC for a patient. NICE guidance (2015) highlights a lack of support from an experienced clinician following identification of someone approaching EOLC as a key area of concern for the LCP (NICE, 2015).
Since the patient had a documented plan in the medical notes from the responsible consultant advising for EOLC in the event of deterioration, it could be argued that a senior review had already been undertaken and that it would be logically sequential to simply implement this plan. However, the guidelines also recommend that assistance from colleagues should be sought where there is ambiguity or doubt (NICE, 2015). A study exploring a possible consensus for cross coverage behaviours agreed that the medical registrar, or equivalent, should always be contacted when there is a change in level of care for a patient (Heidemann et al, 2019).
In their previous role as a nurse, the ACP would instinctively know when a patient was nearing death. While this still remained, the weight of the added responsibility of being the person to action EOLC prompted a further analysis of the situation and possibly added hesitancy.
Effective communication skills have been identified as a required capability in the multi-professional framework for advanced clinical practice in England (Health Education England (HEE), 2017); breaking bad news features as part of the professional portfolio of competency. In this way, it is implied that an ACP could potentially take the lead in initiating a change in level of care to palliation. Seniority and role are intentionally omitted from NICE guidelines when describing who should communicate commencement of EOLC to patients and their relatives, specifying that the task should fall to the most appropriate and available healthcare professional, based on their confidence and competence, as well as their level of rapport with the patient or their next of kin (NICE, 2015).
Conclusion
While the patient was ultimately commenced on EOLC, there was a sustained period of indecision by the ACP. This could have been due to several reasons, which have been explored in this article.
It was likely a combination of contributing factors such as negative past experiences following the demise of the LCP, a lack of regular exposure to EOLC scenarios, a lack of rapport with patient and family due to cross coverage and the effects of role transition to ACP.
In future practice, the ACP intends to be more proactive in commencing EOLC, especially in patients with a clearly documented plan. Indeed, the ACP has acted accordingly since this episode. However, when faced with uncertainty, it is correct to call on senior colleagues for help and advice; in this way, the appropriate care was provided for the patient. It is hoped that this case study may also provide some encouragement to other ACPs who find themselves in similar situations to have to the confidence to initiate EOLC where appropriate.
Early discussions with patients and their relatives, which look beyond a resuscitation decision by including what to expect at the end of life, can afford the opportunity for them to express any wishes they may have and significantly assist in future clinical decision-making. ACPs are ideally placed to have these conversations due to their clinical experience and skillset, but may be avoided at times due to issues with role transition or speculation around who is responsible for such dialogue.
Nevertheless, clearly documented discussions such as these are of a huge benefit to nighttime colleagues and can lead to significantly improved outcomes for patients.
KEY POINTS
- Role transition for advance care practitioners (ACPs) can affect confidence in initiating end-of-life care
- Clearly documented medical plans can significantly help colleagues who are cross-covering patients
- Early discussions with patients and their relatives around preferences for end-of-life care are imperative for improved outcomes for the patient group and their families
- ACPs have an important role to play in ensuring effective end-of-life care for patients.
CPD / Reflective Questions
- What are your own experiences of death, both personally and professionally?
- Have there been any times where you think care for a dying patient could have been improved? How?
- Have you seen examples where care for a dying patient has been particularly good? In what way?
- How would you approach a discussion regarding end-of-life care with a patient or their relatives?