This essay will critically discuss the statement ‘more care, less pathway: a review of the Liverpool Care Pathway’ (Department of Health, 2013), demonstrating knowledge of evidence in connection to complex care and the application of theory into practice. In relation to this, the key elements of assessment planning will be discussed with regards to a service user with learning disabilities in a hospital environment.
Society views hospitals as places to get better, heal and prolong the living environment. When the time comes to die, the person should receive care with dignity and compassion and without suffering (NHS Choices, 2018). In the past, the role of the health professional has been to comfort patients in their pathway to death; neither speeding up death or prolonging suffering (Knights, Wood and Barclay, 2013). Evidence shows a leading problem worldwide in providing end-of-life care in hospital (Di Leo et al., 2015). It shows that professionals are lacking training on how to provide good end-of-life care. The National Institute for Health and Care Excellence (NICE, 2017) stated that, currently 58% of people die in hospital and about 500,000 people die in England each year. These figures show the importance of having guidelines and pathways to provide coordinated services to service users. It is equally important to note that to achieve a good death is challenging.
It is very important to understand when end-of-life care begins. ‘Good end-of-life care helps patients with life-limiting conditions to live as well as possible until they die, and to die with dignity’ (General Medical Council, 2010, pp.4–5). Therefore, the Marie Curie Hospice and Royal Liverpool University Hospital created a tool – the Liverpool Care Pathway (LCP) to improve care for a person who is dying, focusing on holistic needs and based on evidence, allowing a dignified and as peaceful a death as possible in all care settings, focusing on comfort and symptom control (Di Leo et al., 2011; 2015). This allowed for delivering good and skilled care in the last few days and hours of a patient’s life (Macnair, 2013).
However, Sleeman (2014) draws attention to poor end-of-life care (EoLC) in hospitals compared to hospices. To deliver excellent end-of-life care, the LCP was aiming to promote good end-of-life practices. Despite this, the media and the public developed very negative criticism, in that the pathway has been shown to be used as a euthanasia tool. According to Duffy, Payne and Timmins (2011), LCP was focusing on the heavy sedation of patients until they finally die. Therefore, critics of LCP point to its ‘tick box’ exercise and it is seen as standardised care (Cauldwell and Stone, 2015).
Likewise, most of the care professionals were disengaged from the patient, as death was forthcoming, and all end-of-life care was pushed to junior doctors or staff who have insufficient experience or knowledge on how to care (Macnair, 2013). Noting the compelling nature of care, Anderson and Chojnacka (2012) have stated that, the Liverpool Care Pathway was appraised and advocated by many authorities as a model of good practice by successive national policy frameworks (2003; 2006), the national end-of-life care strategy (2008), quality markers and measures for end-of-life care (2009), GMC guidance (2010) and the NICE quality standard for end-of-life care for adults (2011). Despite all the benefits, the Liverpool Care Pathway was depicted in society through the experience of professionals with negative opinions, or concerns with the effectiveness of EoLC. The health professionals were mostly focused on patients’ diseases, instead of the people themselves. A study by Twigger and Yardley (2017; 2016) found that LCP had not been practised correctly in numerous cases, without consistent or adequate training. The importance of the provision of specialist palliative care is therefore evident. Similarly, O’Hara (2011) proposes that in the hospital environment there are not enough resources to care for dying patients, as hospitals are short of staff and there are no facilities for relatives.
Despite these criticisms, when LCP was used correctly, it helped to provide for a comfortable, dignified death without suffering (Compassion in dying, 2015). Moreover, it establishes the appropriate level of information and it is given at the suitable time; opportunity for discussion is acknowledged. With this intention, good communication with the patients (where possible), relatives and carers is granted (Anderson and Chojnacka, 2012). Furthermore, Sleeman et al. (2015) indicate that LCP improved practices of care, for instance, the anticipatory prescribing of drugs for symptom control. As Ashby (2013) has shown, LCP is a strong and wise part of the solution, not the problem and it is only used in the terminal category where death is determined as being inevitable. Middleton-Green (2014) found that all pathways can be effective if they are used correctly; it is also very clear that any pathway cannot replace or embellish clinical judgement; however, it may be helpful for those who are less confident or experienced in caring for the dying, and who lack skills and knowledge in best evidence practice.
Equally, Ashby (2013) agrees that the Liverpool Care Pathway has been poorly used. Costantini et al. (2014) produced strong evidence that LCP does not improve the general quality of care. Above all, in some cases LCP failed to recognise when a person dying is causing distress to family members (Compassion in dying, 2015). The NICE guidelines have been suggested as an alternative to the controversial Liverpool Care Pathway in 2014, amongst claims that nutrition and hydration may have been withheld, which may have had a negative impact on the dying process.
Additionally, Collins et al. (2016) propose the idea that LCP encounters difficulty on application for some patient groups. Current clinical guidelines highlight the importance of seeing all people holistically when giving end-of-life care. It is essential not to make assumptions or distinctions about the care the person needs, because of their diagnosis. However, people with learning disabilities are not receiving coordinated end-of-life care and families are lacking support (Public Health England, 2014).
Mencap (2017) described learning disability as reduced intellectual capacity and challenges with everyday activities. It is important to add that learning disability affects the way a person understands information and how they communicate in an effective way (NHS Choices, 2017). Furthermore, Baldwin and Woodhouse (2011; 2010, pp.138) state that meeting the needs of people with learning disabilities may be problematic, due to a distinction between good health and ill health, lack of education (health professionals) and the assumption that they cannot communicate at all. Nevertheless, involving nurses and patients may empower a more comprehensive insight into facilitating EoLC, from the perspective of continuity care and coordination (Silveira and Forman, 2012). As a result, making reasonable adjustments for individuals with learning disabilities at end-of-life care can assist effective systemic improvements.
According to the British Institute of Learning Disabilities (2017) in England in 2015, there were 1,087,100 people with learning disabilities, including 930,400 adults. Research suggests that, people diagnosed with learning disability die early, compared to the general population, with unmet physical and mental health needs (The Chartered Society of Physiotherapy, 2017). However, it is important to add, that the age of death for people with learning disabilities is growing, which may affect their end-of-life care needs (Care Quality Commission, 2016). Moreover, the Care Quality Commission (2016) points out why inequality exists in end-of-life care: providers and commissioners sometimes lack understanding or consideration for specific needs; might not be completing their obligations under the Equality Act 2010; or healthcare providers do not have a discussion about their EoLC needs. Furthermore, people with a learning disability particularly struggle to access palliative care and support when they need it most (Baldwin and Woodhouse, 2011; 2010, pp.137–140).
The World Health Organisation (WHO, 2017) drew attention to the lack of consciousness between policymakers, health professionals and the public about what palliative care and end-of-life care is, and the benefits it can offer. Following this, evidence shows that there are many barriers to accessing quality healthcare for serious and terminal illnesses, including delayed diagnosis and staff recognising that people diagnosed with learning disabilities were coming to the end of their lives. With this in mind, research suggests that healthcare professionals have inadequate knowledge of good end-of-life care practice for people with learning disabilities (Kumar et al., 2012).
According to the research, usually people with a learning disability do not look out for healthcare and as a result they are more likely to have unidentified health needs (Morton-Nance and Schafer, 2012). For this reason, it is significant to note that people with this disease are often dependent on carers or family members to help find out their needs and wishes, and this can lead to missing common disorders, such as physical and mental health problems. Although, Harrison et al. (2006) confirm that individuals with learning disabilities still have limited or no authority over their lives and care, and are often not involved in planning processes. This statement poses the question: if their choices are influenced by family or carers, how could professionals ensure they have choices for end-of-life care? Therefore, to facilitate excellent EoLC, nurses must be prepared to offer the right knowledge and skills (Davis, 2011). An equally significant aspect to consider in providing end-of-life care for individuals with learning disabilities, is expressing their views and wishes in a non-verbal way. However, health professionals avoid talking about death and dying due to fear of the individual’s capacity to understand, and leave that conversation to the family or carer (Tuffrey-Wijne et al., 2017). Sufficient support and education will help nurses to be with patients as they near EoL and be ready to give the right care. NHS England’s guidance (2017) highlights the importance of engaging individuals with learning disabilities in advance care planning, as it helps to improve the quality and experience of care for the person.
Planning is an essential part of supporting people with end-of-life care. It has been defined as a process of communication between parts; care planning will help to assess individuals’ needs and wishes with their family members and carers and allow to plan future care (Hayes et al, 2014; 2013). Even advance care planning has many benefits, evidence shows that too few people are offered the opportunity to use advance care planning. Kononovas and McGee (2017) reported in 2012 that just 5% of people have a living will or advance care plan in place. Furthermore, good care planning will help to deliver quality of EoLC. Although this may be true, Bird (2014) suggests that advance care planning cannot resolve challenges related to decision-making or promise easy decision-making pathways. Thus, it may help to deliver an effective individual care plan. Detering et al. (2010) found that models of advance care planning can improve outcomes for patients; a coordinated, systematic and patient-centred approach to care planning from the perspective of the patient and the family can reduce stress, anxiety, and depression in surviving relatives. Advance care planning at the end of life has benefits, it empowers the service user by giving a sense of control and taking part in a joint health care decision-making process (Hilliard et al., 2013). However, death is still a taboo subject in society for the majority of people. Hickey and Quinn (2012) highlight the importance of education and discussion about death in society as it allows to minimise unfavourable apprehension about the process of death and dying, and unnecessary interventions, and may help people to think about and identify future wishes, and how, and what support is available to them. As a result of fear, these types of conversations mostly take place when people are severely ill and/or close to death, due to a lack of openness. Hence, Almack et al. (2012) state that, in most cases, service users or family members are expecting healthcare professionals to start a conversation about end-of-life care, while professionals were often doubtful to do so, as they are taking away hope and the matter of timing. It draws attention to the importance of raising awareness about death and dying, making people aware that dying well is an integral component of living well (Hickey and Quinn, 2012). The end-of-life care pathway provides a framework for care and focuses on professional roles, tasks and assistance needed. Besides this, it is vital to remember that each person’s end of life journey is unique, and that an end-of-life pathway is not a pattern to fit everyone (Hayes et al, 2014; 2013, pp.30–33). However, a pathway is a helpful tool to provide the best possible care.
According to Duffy, Payne and Timmins (2011), care pathways are designed, based on guidelines and the best evidence available and are used as a multidisciplinary team-care map. However, care pathways have been criticised by many healthcare professionals. As a consequence, doubts have been raised on the necessity to have them. Schrijvers, Van Hoorn and Huiskes (2012) stated that, care pathways are the dehumanisation of work, it leads to a reduction of the patient’s choices and it may influence on-the-job satisfaction. There is limited evidence on the impact of pathways on better service-user care; moreover, research proposes that care pathways may be most suitable for predictable, routinised procedures (Hunter and Segrott, 2008). For patients who suffer from multiple pathology, comorbidity, severe multiple organ disease or rare disorders, care pathways are lacking in clear definitions for specific patient groups and/or multidisciplinary guidelines, for instance for people with learning disabilities (Schrijvers, Hoorn and Huiskes, 2012). In addition, De Bleser et al. (2006) outline that a clinical pathway is a structure of care management for a particular group of patients. Also, the duration of care is difficult or impossible to predict, not to mention that care pathways can create a gap between evidence-based practice and current nursing practice.
In summary, LCP was designed to fill a gap in end-of-life care, from the hospice setting to the hospital setting. It aimed to endorse patient comfort and assist with multidisciplinary communication. However, so far there is no strong evidence to prove possible benefits for patients using LCP (Veerbeek et al., 2008). In spite of criticism, there is some research declaring that LCP improves thorough symptom control guidelines to manage the main symptoms of end of life. It is about focusing on the holistic needs of the individual (Becker, 2013). This requires professional commitment to care. According to The National Council for Palliative Care (2016), to deliver high quality end-of-life care, professionals must be well trained, competent and compassionate.
Sufficient education and skills were consistently presented as crucial to facilitating end-of-life care. Similarly, Tuffrey-Wijne et al. (2017) imply that it is essential for professionals to receive adequate training in communication with people diagnosed with learning disabilities. This has significant practice implications. Evidently, individuals with learning disabilities suffer from inequalities in care provision and access (Morton-Nance and Schafer, 2012).
Learning disability requires a person-centred approach. Despite this, there is evidence of human rights abuses in respect to end-of-life decisions and access to palliative care (O’Donnell and Smith, 2018). Following this, Public Health England (2014) declared that professionals failed to recognise that patients were coming to the end of their lives. As a result, they had limited access to end-of-life care, compared to people without a learning disability.
It is clear that professionals must provide high standards of care for a dying person. The care must meet individuals’ wishes and needs with dignity and respect. Advance care planning allows for improved planning and provision of care. That being said, the Gold Standards Framework (2018) refers to the importance of making sure needs and preferences are met, and it helps to plan future care. This may aid to act in the patients’ best interests; however, to be able to deliver the best possible care, professionals must receive sufficient training.