‘One Chance to get it Right’
The development of Priorities for care, is intended as the basis of care for everyone in the last few days and hours of life, irrespective of whether that care is provided in a hospital, hospice, the persons home (including care homes) or another place.
Leadership Alliance for the Care of Dying People. 2014. One Chance to Get it Right. London. UK Government. (LACDP, 2014).
This essay will critically discuss, debate and analyse the ‘Once Chance to get it Right (LACDP, 2014) document above and demonstrate knowledge and understanding of relevant evidence in relation to end of life (EoL) care. The importance of recognising when people with Learning Disabilities (LD) are approaching EoL care and the communication barriers people with LD face within the healthcare system will also be discussed.
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The above statement is from a document published by the Leadership Alliance for the Care of Dying People (LACDP, 2014, p. 6). The LACDP is a combination of twenty-one national organisations set up to lead and provide a focus for improving the care of people who are dying and their families, (LACDP, 2014, p.6). The focus on five priorities of care; which aims to focus on the patient and put them at the centre of palliative care (Lancet, 2014, p. 103). With this new approach to caring for dying people based on the service users and loved ones wishes and needs, the LACDP (2014) aims to promote a more individualised care pathway (LACDP, 2014, p. 6) reflecting openness, transparency and candour that further enhances communication and participation in decision making (Taylor, 2015, p.139). It was developed to replace the Liverpool Care Pathway, to encourage a more individualised care pathway, reflecting on openness, transparency and candour that further enhances communication and the involvement of the dying person and those important to them rather than generic protocols (LACDP, 2014, p.7, Luckhurst and Clarke, 2017, p. 130). The five priorities reinforce the focus for individualised care according to the needs and wishes of the dying person in the last few days and hours of life (LACDP, 2014, p. 10). In addition to this, it emphasises the importance of sensitive communication, involving the dying person and with their agreement, their family and those important to them are involved in decisions about treatment and individualised plan of care (Luckhurst, and Clarke, 2015, p.130-131).
The Department of Health (DoH) define LD as the presence of having a reduced ability to understand new or complex information, a reduced ability to learn new skills, and to cope independently, which occurs before adulthood with a lasting effect on development (Department of Health, 2001, p. 14). Some individuals with LD may have different ranges of presenting competencies with their social functioning skills and behaviours and communication (Read, 2005, p. 15). In relation to health care individuals with LD are known to have a higher risk of developing additional physical and mental health problems compared to the general public and as such more likely to be high and frequent users of all healthcare services (Alborz et al. 2005, p. 174).
Mencap highlighted failures to provide quality healthcare in their report Death by Indifference (MENCAP, 2007), which described experiences of six families which members had passed away after experiencing poor quality care (Mencap, 2007, p. 3). Talbot, Astbury and Mason, (2010, p. 200). This report detailed the failings of health service care leading to deaths which Mencap suggested was institutional discrimination. (MacArthur, et al. 2015, p. 1554). A qualitative study by Afia et al (2013) exploring barriers of accessing help from health services, found several themes relating to the challenges in healthcare access and discrimination from health services. A number of patients in the study felt they experienced discrimination because of their LD or treated differently (Afia et al., 2013, p. 9). Some of these experienced mentioned in the study were supposedly due to direct discrimination caused by negative staff attitudes towards patients and carers and failure to treat patients with respect and dignity, whereas other experienced were due to indirect discrimination by the lack of staff awareness of patient’s needs (Afia et al., 2013, p. 9). However, a study by Flynn, et al (2015) researching the attitudes of oncology nurses highlighted issues in confidence of communication skills when dealing with patients with LD (Flynn, et al. 2015, p. 569). Stating the Nurses felt less confident and positive in providing care to patients with LD, including reports of having less relevant knowledge and experience in caring for this patient group (Flynn, et al. 2015, p. 571). Another study by Bailey, Doody and Lyons (2014) suggest evidence of limited experiences of nurse’s ability to care for service users with LD, and many felt they lacked knowledge and skills required to fully support them. (Bailey, Doody and Lyons, 2014, p. 32). This suggests that effective training needs to be picked out and made accordingly for nurses practising in specific contexts (Lewis, Gaffney and Wilson, 2016, p. 1476).
One the challenges of EoL care, highlighted by the End of Life Care Strategy (Department of Health, 2008, p. 45) states that those with LD may not be identified, resulting in inadequate care. Individuals with LD have a high rate of morbidity and complex healthcare needs that are frequently unmet and are often diagnose late in their disease trajectory partly due to lack of screening opportunities, and in some cases seldom referred to hospice and palliative care services (Schofield, 2015, p. 81). Some of the leading causes of death for individuals with LD include respiratory disease such as pneumonia and aspiration, the second leading cause of death is cardiovascular disease and there is an increased incident of oesophageal, gastric and gallbladder malignancies and dementia within this patient group (Tyrer and McGrotgher, 2009, cited in Schofield, 2015, p. 81). Talbot, Astbury and Mason (2010, p. 202) highlight a further health issue for people with LD, which is the secondary prevention which involves the early detection and screening of physical health problems. Diagnostic overshadowing can also be frequently reported in individuals with LD (Mason and Scior, 2004). This can happen when a healthcare professional interprets changes in individuals as being part of their LD rather than a symptom, exacerbation or indicator of ill health (Morton-Nance and Schafer. 2012, p. 44, Mencap 2007).
The LACDP highlighted that there are misperceptions about when a person is approaching EoL (LACDP, 2014, p. 17). In a study by Li, and Ng (2008) the analysis of data showed areas of uncertainty about what specific signs and symptoms to recognise when patients were becoming unwell or what to expect as the disease progressed, highlighting the issue that timely diagnosis and intervention may possibly be delayed and in result appropriate care may be unnoticed (Li and Ng, 2008, p. 947). This poses a barrier to assessing and planning personalised care in advance, which is an imperative part in the nursing process as pre planning of care has found to be one of the most important ways to ensure patient-focused care (Ingleton, 2015, p. 8). However, a study conducted by Regnard, et al., (2007) highlighted a high number of distress cues that carers and family members could easily identify by observing for changes and absence of content signs and reduction in activity (Regnard, et al., 2007, p. 284). This suggests that family members and carers for service users with LD have a higher chance of recognising symptoms of distress.
Regnard, et al., (2007) states that “although distress may be hidden, it is never silent” (Regnard, et al, 2007, p. 277). People with LD may have different capacities for receiving, understanding, remembering and expressing themselves through language (Regnard, et al., 2007, p. 277). To support Regnard’s theory, Perry et al., (2013) argues communication impairment as a cause in miss diagnosis, symptom recognition and recognising when they are approaching EoL (Perry et al, 2013, p. 205). Tuffrey-Wijne (2003), has argued that communication is one of the biggest obstacles to accurate medical assessments (Tuffrey-Wijne 2003, cited in Read, 2005, p. 16). The second priority of the LACDP highlights the importance of communication, it states if the dying person needs additional support to understand information, communicate their wishes or make decisions, then these needs must be met (LACDP, 2014, p. 19). Research suggests that shortcomings exist in the delivery of EoL care to people with LD. A mixed-methods study by Ryan et al, (2010) highlighted that although the staff displayed a willingness to provide palliative care to people with LD, staff lacked experience and confidence to do so (Ryan et al., 2010, p. 571). This could present a challenge for healthcare professionals attempting to implement the five principles of care for the dying patient.
The End of Life Care Strategy (Department of Health, 2008, p. 60) recommends that people receiving EoL care should be able to express their wishes and their preferences in relation to their care and where they would prefer to die. However, people with LD will often have a different way of communicating that may involve non-verbal methods. Verbal communication with a person with LD is often hampered, health professionals and care/relatives rely strongly on their joint interpretation of their needs and signals of distress. This can be problematic as some healthcare staff have been known to have a shortage of knowledge and skills regarding other communicative aids (Bekkema, et al. 2015, p. 7). This suggests that opportunities may be missed for this group of people to make decisions, communicate their wishes and ask for treatments such as pain relief. Missed opportunities for communication goes against the second priority of care in the LACDP, which states that open and honest communication between staff and the person who is dying, and those identified as important to them, including carers, is critically important to good care (LACDP, 2014, p. 19).
Although some people with LD may have communication tools that they use as in their daily life, this may not always meet their needs during their stay in hospital which may be caused by hospital staff not being familiar with the model of communication used. Hannon and Clift (2011, p.109). Establishing how the person normally communicates, such as alternative communication or augmentative communication like Makaton or with the use of pictures to support speech. Facilitating the person in communication as well as giving them time to allow them to process information by using straightforward language and using those who know them to assist, where possible can help the struggles of communication barriers health professionals face when discussing death and dying (McLaughlin, 2015, p. 80).
According to Becker (2010, p, 153) the accurate assessment of pain is the cornerstone of successful pain relief and long-term management of that pain. Without it there are many facets of the patient’s experiences that could be missed, and consequently their pain may not be well controlled. A study by Morton-Nance and Schafer (2013) shows how the loved ones of services users with LD described how witnessing a patients’ poor experiences of inadequate symptom control significantly affected them, describing symptoms of physical and mental pain experienced by people with a LD, which were often not addressed or controlled satisfactorily (Morton-Nance and Schafer, 2013, p. 44).
Pain assessment in groups such as individuals with LD can be difficult to assess and can result in poor management and outcomes (Cleary and Doody, 2016, p. 80). There are a number of tools such as the Abbey pain scale (Abbey, et al., 2004, p. 6) that can support health professionals to identify pain for those with a communication difficulty and/or cognitive impairment that are appropriate to use with people with a LD. Non-verbal communication is really important in these cases (Mitten, 2006, p. 17). Distress may be due to pain, but it may also be caused by other symptoms or anxiety. The Disability Distress Assessment tool (Regnard, et al., 2007, p. 276) can be used to assess and identify distress cues in cognitively impaired people (Regnard et al., 2007, p. 279). This is emphasised in the second priority, which states that pain language must be used verbally and in all forms of communication. If the dying person needs additional communication support to understand information, communicate wishes and make decisions, then these needs must be met. (LADCP, 2014, p. 19).
The fifth priority is about creating an individualised plan of care, with symptom control and psychological, social and spiritual care, which must be agreed on by healthcare providers and delivered with compassion (LACDP, 2014, p. 88). Communication in the way that people with a LD can understand is imperative to create an advance care plan (ACP) that is individual to the service user. Parry, Land and Seymour (2014) discussed the importance of how people with a specific terminal diagnosis should be provided with opportunities to discuss their future care. Discussions about these matters complete part of ACP, which aim to help individuals anticipate how their condition may impact them in the upcoming future and, if they wish, to record their choices, preferences and advanced decisions to refuse treatment (Parry, Land, Seymour, 2014, p. 331). The Palliative care for people with LD network state the importance that everyone, including those with LD, are offered opportunities to engage in ACP. Even if they do not have mental capacity to fully engage in ACP discussions, the person should still be supported with their individual communication needs to share their wishes and choices about EoL care. NHS England (2017, p. 13).
ACP and early discussions about what the service users wishes, and preferences involving EoL care and dying between health professionals and the dying person and their loved ones, can go some way to overcome the difficult choices between active treatment and palliative care and service users wishes, before their condition deteriorates to the point where they are no longer able to communicate their needs (MacArthur, 2015, p. 1159). The ACP framework and the way in which ACP highlights the preferences and wishes of patients, could also be appropriate for people with LD and their family/carers (Voss, et al, 2017, p. 939). A literature review by Kirkendall, Linton and Farris (2016), suggest that there is a lack of involvement of the individual with a LD in their EoL decision processes, explaining that it is vital more time is spent on how to communicate a terminal diagnosis those with LD so professionals are able to assess and create ACP’s in partnership with the individual (Kirkendall, Linton and Farris, 2016, p. 993). Voss, et al, similarly agree on the importance of ACP as individuals with LD and their limited capacity for understanding and communication, and understanding their own health conditions, can have trouble expressing symptoms and feelings, and have difficulties with medical examinations or interventions. Voss, et al, (2017) also suggest that all EoL decisions should therefore carefully consider the benefits for the patient’s quality of life (Voss, et al, 2017, p. 938).
Research has shown that joint working and learning between LD and palliative care services can enable more robust assessment, care planning and are delivery to people with LD (McLaughlin, et al., 2014, p. 80). The five priorities of care argue the significance of joint development of a plan for end of life care (LADCP, 2014, p. 156). People with a LD may currently be perceived as challenging to many palliative care services, yet there is lack of research around this topic. More empirical and collaborative research is needed that highlights positive practice; recognizes practice development, and identifies innovation, practical interventions and approaches. This is needed to enable professionals to understand the varied perceptions of illness and treatment, increase knowledge and develop skills, and have an appreciation of need from the key people involved (Read, 2005, p. 18). The physical health care needs of people with LD pose challenges to all involved in their care. In order to make progress in all levels of health promotion, partnership working involving generic health services, specialist LD health services, social care and education providers is required. Talbot, Astbury and Mason (2010, p. 202). This is echoed by Hahn and Cadogan (2011), cited in Dunkley and Sales (2014), who suggest that the implementation of a palliative care education programme tailored to the needs of care staff could increase confidence in EoL care provision (Dunkley and Sales, 2014, p. 281).
In conclusion, this essay has discussed the importance of recognising a patient with LD is approaching end of life care and the difficulties faced in accessing EoL care. This has been discussed in relation to cognitive ability and the barriers health care professions face in planning appropriate care in reasonable time, as well as how this affects those with LD. This essay has also discussed how communication barriers affect how service users receives EoL care and how the importance of appropriate communication is needed to ensure that assessments and planning are completed regarding their wishes and best interests.
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