PALLIATIVE CARE
End-of-life care after the Liverpool Care Pathway Laura Middleton-Green
Laura Middleton-Green is Lecturer in Palliative and End-of-Life Care, University of Bradford
T
he Liverpool Care Pathway (LCP) is a tool originally developed to spread the hospice model of care in the last days of life into other clinical areas such as hospital and the community (Ellershaw and Wilkinson, 2003). However, in 2013, intense and sustained media attention on alleged failings of care for patients on the LCP required action to be taken to ensure not only the protection of the most vulnerable patients, but the preservation of the reputation of the health-care profession generally, and those providing palliative care in particular. The report More Care, Less Pathway (Neuberger et al, 2013) recommended that the LCP be suspended from use by July 2014 in England, and December 2014 in Scotland.
trust has reduced from 50% to around 5% (Bradford and Airedale Managed Clinical Network (BAMCN), 2014). Data for use of the LCP in the community are not currently available, but anecdotal feedback is that it has almost disappeared from use. In most instances, the examples of poor care identified in Neuberger et al (2013) were directly attributable to poor implementation of the LCP rather than to errors or failings of the recommended practice contained within the pathway. However, the review did identify examples of possible falsification, where staff had documented that a difficult conversation had taken place but the family reported that this had not occurred.
Replacing the LCP
The LCP was developed as a guide to prompt best practice. Any pathway can only be as effective as the professional using it. It does not, and cannot, replace or improve clinical judgement or effective communication. A joint statement supported by 22 professional and charitable organisations (Mitchell et al, 2013) expresses concerns at the perceived rapidity of withdrawal of the pathway and the absence of high-quality replacement guidance, and endorses the recommendations within the LCP. In one respect, the withdrawal of the LCP need not affect the delivery of compassionate end-of-life care by competent professionals. Palliative care predates the LCP and is a continually evolving discipline. However, it does mean that staff who may be less confident or experienced in caring for the dying feel vulnerable and uncertain about best practice. This article aims to empower community nurses to provide the best possible care to their dying patients and to their families in the absence of nationally agreed guidance.
An alliance has been established whose aim is to produce replacement guidance on care. However, although the recommendations are that the LCP is phased out over a period of several months, anecdotal reports in many areas suggest that this has already begun (Nursing Standard, 2013; Stephenson, 2013). This may be as a result of concerns about negative media and feedback from staff and families. At present, there is no advice or guidance on what (if anything) is to replace the LCP, although the Leadership Alliance for the Care of Dying People (LACDP) is staging a series of consultation meetings nationwide with a view to developing a suitable individualised care plan template (LACDP, 2013), responding to the key recommendations of the review. Locally, there is evidence that suggests use of the LCP in the acute
ABSTRACT
This article presents a review of key issues around caring for people in the last hours and days of life. The aim is that community nurses will be able to support patients and families, and to provide and explain decisions and interventions to promote comfort and dignity based on current evidence.
KEY WORDS
w Liverpool Care Pathway w End-of-life care w Palliative care
250
Email: [email protected]
Understanding the LCP
Health care and dying Death is a natural life event. In the UK in 2010, most people died in acute hospitals, with an increasing number dying in nursing homes, and around a fifth of people dying at home (National End-of-life care Intelligence Network Home (NEoLCIN), 2011). Leadbeater and Garber (2010) identified that most people express a preference to die at home. For some, this is not possible:
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British Journal of Community Nursing May 2014 Vol 19, No 5
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TOPIC HEADER PALLIATIVE CARE accidents, unexpected deaths and failure to respond to intensive treatments mean that hospital is the only option. However, for many, death arrives at the end of a period of dying, with a diagnosis of a known life-limiting illness such as cancer, chronic respiratory disease or dementia (Department of Health (DH), 2008). Community nurses support these people daily, visiting and supporting at home and enabling comfort at whatever stage in their life trajectory they find themselves (Thomas and Noble, 2007). However, it is well known that generalist palliative care providers find numerous challenges in this role, including difficulties in prognostication and decisionmaking at the end of life (Shipman et al, 2008).
Improving care of the dying The dying phase
When someone is approaching death, a range of physiological changes can be observed. For example, the body’s extremities may turn mottled, grey or blueish (Twycross and Lichter, 2010). Consciousness level will reduce significantly, to the point where they may be completely unrousable. Oral food or fluids become difficult to tolerate, and swallowing tablets is likely to have become impossible. One of the dangers highlighted in Neuberger’s report was the misdiagnosis of dying when a reversible cause could be responsible for these observed changes. Table 1 summarises the common reversible causes of deterioration.
Eating and drinking Many of the cases in the report described how patients were starved to death or refused fluids. For most, the natural dying process is accompanied by loss of thirst
and appetite as the body’s digestive tract and renal system cease to function (Twycross and Lichter, 2010). The LCP advises against routinised administration of intravenous hydration at the end of life unless there is a clear clinical indicator. The evidence suggests that, in renal failure, which accompanies the process of natural death, the kidneys become less able to excrete urine and patients are at risk of developing a build-up of fluid, known as pulmonary oedema, as there is nowhere else for this fluid to go (General Medical Council (GMC), 2010). Alternatively, however, for someone where they may or may not be dying—such as a patient with dementia and a severe chest infection on antibiotics—to deprive them of fluids is to potentially cause toxic build-up of other medications and dehydration to the point of death. What is hopefully clear in these two contrasting examples is that clinical judgement is of paramount importance in the decision of whether to commence, continue, or withdraw intravenous fluids. Although care of the dying is a valued part of community nursing practice, situations where such decisions need to be made are potentially highly stressful for both staff and families. Clear communication between families, nursing and medical staff is essential here, and this will be explored in the next section.
Communication Communication is an essential component of end-of-life care (Thomas, 2003; Thomas and Noble, 2007). One way in which the LCP aimed to improve care of the dying is by prompting the health-care professional to discuss the likelihood of impending death with the patient’s family, in order that they can prepare themselves practically, emotionally and spiritually (Ellershaw and Wilkinson, 2003).
Table 1. Reversible causes of deterioration
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What it is
How it presents
What causes it
How it can be treated
Hypercalcaemia
Confusion, increased pain, drowsiness and nausea, often rapid onset
Thought to affect up to 10% of patients with advanced cancer, particularly myeloma (Gertz and Greipp, 2003) and breast and prostate cancers (Cavalli et al, 2004)
Renal failure
Drowsiness, reduced urine output
Dehydration, end-stage disease, long-term use Adjustment or discontinuation of nephrotoxic of non-steroidal anti-inflammatory drugs (Hall medications and Guyton, 2011)
Opioid toxicity
Drowsiness, nausea, confusion
Excessive dose of opioids or inefficient excre- Reduce dose of opioids tion of opioids due to renal failure or dehydra- In excessive cases administer naloxone but tion under specialist palliative care supervision— risk of severe refractory pain and withdrawal agitation (Twycross et al, 2011)
Infection
Drowsiness, particularly in the elderly
Most frequently urinary tract, respiratory tract Oral antibiotics if appropriate, admission for or wound infections (Hall and Guyton, 2011) intravenous antibiotics if appropriate
Dehydration
Drowsiness, confusion, Possible swallowing problems or access to reduced urine output fluids
British Journal of Community Nursing May 2014 Vol 19, No 5
Inpatient treatment with intravenous rehydration and bisphosphonates. Note: often a recurring problem and may not always be appropriate to treat. Seek advice from specialist palliative care
Oral hydration where possible, consider subcutaneous rehydration or admission for intravenous rehydration if appropriate
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PALLIATIVE CARE
Table 2. Anticipatory medications and appropriate use Symptom Pain Dyspnoea
Medication
Dose
Opioid e.g. morphine, Dependent on patient, clinical reason diamorphine for pain and any previous opioid. ‘As needed’ dose should be 1/6 of 24-hour dose of regular opioid If not on regular opioid, morphine S/C 2.5 mg
Anxiety or agitation
Midazolam
S/C 2 mg to 5 mg hourly. Midazolam has a short half-life so effect needs monitoring closely. May need to be delivered via a syringe pump if patient requires repeat doses to maintain steady plasma levels E.g. Hyoscine butylbromide S/C 20 mg, maximum 120 mg per 24 hours
Respiratory secretions
Antisecretory e.g. hyoscine butylbromide (Buscopan), Glycopyrronium bromide glycopyrronium, hyo- S/C 200 mcg scine hydrobromide Hyoscine hydrobromide S/C 400 mcg
Nausea and vomiting
Antiemetic eg haloperidol, levomepromazine, metoclopramide dependent on cause of nausea and vomiting
E.g. Haloperidol S/C 2.5 mg Metoclopramide S/C 10 mg Levomepromazine S/C 6.25 mg
NB Doses are examples only. Always ensure medical individual assessment. S/C = subcutaneous. Adapted from www.palliativedrugs.com, www.palliativecareguidelines.scot.nhs.uk
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we use (Payne et al, 2000). A distraught family member is likely to gaze blankly at the mention of signing a DNACPR form (the acronym stands for ‘do not attempt cardiopulmonary resuscitation’)—but if a gentle explanation regarding the realistic goals of care is undertaken, however hard and upsetting, the patient and their loved ones will ultimately benefit. Avoiding euphemisms such as ‘very poorly’ or ‘deteriorating’, and using clear words such as ‘dying’, are helpful for remaining clear. A helpful leaflet entitled End of Life: The Facts has been produced by Marie Curie (2011), as well as a range of information leaflets that can be freely accessed online. People only retain a small proportion of what they are told when under stress; families may need gentle revisiting of certain issues over time. Furthermore, in cases where families are large it is important to ensure that the plan of care is communicated to all. The memory of the care received by patients will remain with family members for a long time (Saunders, 1967; Williams and McCorkle, 2011). Indeed, often the nature of end-of-life care can influence the course of grief (Sanderson et al, 2013). The present author can recall speaking to a patient who was in her late seventies who described her own mother being commenced on a syringe driver. She said ‘I never knew that after that was started she would never talk again. Nobody told me they were putting her to sleep’. Her mother had died a decade earlier, and she had been haunted ever since by the (mis)conception that the health-care professionals had shortened her life by administering strong sedation via the syringe driver.
Comfort At the end of life, the maintenance of physical and emotional comfort is imperative. A person is likely to be mouth breathing and may also have complicating factors such as oral candida infection (common in those with an impaired immune system) or other mouth problems (Twycross and Lichter, 2010). Profound weakness can make it impossible for the patient to relieve their own pressure areas; however, the need to change positions regularly to prevent pressure damage needs to be carefully balanced against the potential for inflicting pain through repositioning. An example might be somebody with extensive bone metastases and severe pain on movement. In some cases, this can be remedied through administration of prescribed analgesia prior to planned interventions such as repositioning (Emmanuel et al, 2006). In other cases, modified repositioning such as tilting the bed slightly may suffice, particularly if the person is very close to death (Twycross and Lichter, 2010).
Medication Common symptoms at the end of life include breathlessness, pain, agitation and nausea (Ellershaw and Wilkinson, 2003). All patients should have required medication for symptom control available. It is important that the likelihood of these symptoms arising is assessed on an indi-
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Many of the failures of the LCP can be attributed to lack of communication between professionals and families. It is with some sense of irony that the author recalls relating to students the story of an elderly gentleman whose wife she had been visiting as a Macmillan nurse, and with whom she had remained in contact when she was admitted one night to the medical assessment ward. ‘It’s alright, she’s obviously not as poorly as we feared’, he assured me on the telephone, ‘the nurse tells me they’re taking her to Liverpool’. This brought the realisation that the patient’s husband had no idea what this meant; for him, it sounded as though his beloved wife was off to receive some new treatment format in Liverpool. The withdrawal of the LCP does not mean that community nurses should stop talking about death and dying. On the contrary, it has never been more important that we communicate clearly, sensitively and compassionately with families and carers to explain the natural process of dying. This is not an easy task in a society in which open discussion of death and dying remains taboo (O’Gorman, 1998; Chapple, 2010; Waldrop, 2011). It is essential that nurses maintain clear, sensitive and honest communication with families about what is happening. Avoiding jargon is paramount; it is notable that we become accustomed to the everyday language that
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TOPIC HEADER PALLIATIVE CARE vidual patient basis, as not all life-limiting conditions are likely to cause all of these symptoms. Where identified as a possibility, however, prescribing of anticipatory (‘justin-case’) medications can reduce the need for a crisis admission or delays in control of distressing symptoms (Faull et al, 2012). Guidance on the specific drugs for this varies by geographic location, but in general, medications in Table 2 are thought to be effective as subcutaneous injections for these symptoms. A key finding of the Neuberger report (2013) was the importance of communication and advance care planning, in preparing for and coping with the dying phase. Recommendations from the National Council for Palliative Care (2013) state that community-based patients
‘must be assessed regularly and frequently so that the end-of-life care plan can be made or adjusted, taking into account the patient’s wishes (where known) and families’ views.’ Since most deaths occur out of hours, it is essential that a patient’s needs and plan of care are communicated to providers of out-of-hours medical and nursing services. In some areas, this is being done through use of shared electronic records. In Bradford and Airedale, a unique palliative care template has been developed within this record to prompt health-care professionals to carefully document important aspects of the patients’ needs, such as preferred place of care, whether or not anticipatory medicines are available in the home, and whether a key member of the health-care team has discussed cardiopulmonary resuscitation with them (see www.palliativecare. bradford.nhs.uk).
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Case study and discussion Key decisions that may need to be made in the community setting include starting or ceasing subcutaneous fluids, and artificial nutrition such as via percutaneous gastronomies (PEG) tubes. The GMC (2010) provides some useful guidance around this. Of particular interest is the notion that, ethically, it is much less difficult for both families and health-care professionals to make a decision not to start a life-prolonging treatment than it is to withdraw such a treatment. Consider the example in Box 1: Ensuring sensitive communication and accurate documentation of the events described in Box 1 is essential. There are numerous emotional ‘flashpoints’ for both family and the health-care team that will be evident from the vignette. There are rarely clear rights and wrongs in the maelstrom of an emotionally intense end-of-life care scenario such as this. It is natural for family members to instinctively feel that the weak require hydration and nutrition in order to cope with the burden of illness (Kitzinger and Kitzinger, 2014). The vignette highlights how sensitive explanation by the health-care team enabled Tom’s wife to feel involved in decision-making, was able to see for herself the advantages and disadvantages
British Journal of Community Nursing May 2014 Vol 19, No 5
Box 1. Case study Tom is a 49-year-old man with advanced motor neurone disease who lives at home with his wife, Helen. He has expressed a wish to avoid hospital admission and has an advance decision to refuse treatment in relation to intravenous antibiotics. Despite 48 hours of antibiotics via his percutaneous endoscopic gastrostomy (PEG) tube, he is continuing to deteriorate. When reviewed at home, he is semi-comatose and has audible respiratory secretions. The community nurse and GP discuss with Helen the option to discontinue his PEG feed and fluids. She becomes distressed and verbalises a fear that he would not be strong enough to fight his infection if he has not eaten food or becomes dehydrated. The team gently explain that his difficulty breathing is because of a worsening infection, that he is likely to be dying, and that the focus on maintaining comfort includes trying to make his breathing as easy as possible by reducing the fluid in his respiratory tract. They explain that they may need to use some medication to help him feel comfortable but will make sure she is aware of what these are. She remains anxious about the fluids, expressing guilt at the sense that they were ‘playing God’ by deciding to stop hydration. The nurse acknowledges her distress, and on discussion with the GP and a specialist palliative care team, they agree to initially discontinue his feed, but to continue PEG fluids at a reduced volume for 24 hours. The following morning, when the district nurse arrives, Helen explains that his breathing sounded terrible and bubbly all night, and that she now understands the importance of not allowing him to become overloaded with fluid when his lungs are so weak. Helen tearfully agrees with the decision by the nurse and GP to discontinue fluids. Over the following days, the nurse visits again, and ensures she makes time to sit and have a cup of tea with Helen. Helen often cries, and talks at length about their marriage, his illness, and her feelings. When he develops some signs of agitation, the nurse gently explains that this often happens when death is near, and after assessing carefully for reversible causes of agitation such as urinary retention or pain, she administers a subcutaneous injection of midazolam, with good effect. Tom remained settled and sleeping after that. Tom continued to deteriorate from his chest infection, becoming sleepier, and died peacefully the next night, with his wife in bed beside him.
of continued artificial hydration, and to begin to prepare herself for his death. The vignette also illustrates a compromise: had there been a point at which the patient’s welfare was threatened—for example, by showing visible signs of distress at his respiratory secretions—then the team would have been forced to act sooner to make a clinical decision here. However, Tom was semi-comatose and not apparently upset by his physical state, which allowed them to take their time over the decision so that his wife did not feel pressurised or distressed at what was happening. For Tom’s wife, this was her first experience of such a situation, and her distress, guilt and anxiety are understandable. The vignette illustrates good communication and effective and appropriate teamwork, culminating in Tom achieving the death he had asked for, in the comfort of his own home. Tom was not on the Liverpool Care Pathway. However, his wife and the team were aware that he was dying, and the conversations were frank and honest. His care did not suffer from the fact that its documentation was in the
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regular medical notes. What distinguishes good care from poor care is the quality of the communication, not the paper on which it is recorded. Communicating around dying is never easy, and it is well known that, in the UK, people feel uncomfortable talking about death and dying (DH, 2008; Dying Matters, 2013). Only around a third of people over the age of 50 have made a will or articulated their end-of-life care preferences to their loved ones (Dying Matters, 2013).
Conclusion Whatever document replaces the LCP in July, it must acknowledge the need for changes that support staff to have difficult conversations, possess good knowledge of the process of dying and potentially reversible signs of deterioration, how to make collaborative decisions and the best evidence for managing difficult symptoms. We all have the right to a good death, free from troublesome symptoms, in our chosen place of care. A report by Demos and Sue Ryder (2014) found that 63% of people in the UK would like to die in their own homes. A total of 78% of those surveyed prioritised being pain-free at the end of life, but only 27% believed that they could be pain free if dying in their own homes (Demos and Sue Ryder, 2014). Community nurses are vital in supporting people to die at home if that is their wish, but in order to do so they require support and confidence in the skills and attitudes required to deliver sensitive and appropriate end-of-life care. BJCN Bradford and Airedale Managed Clinical Network (BAMCN) (2014) Meeting minutes. http://tinyurl.com/ox9ucf2 Cavalli F, Hansen HH, Kaye SB (2004) Textbook of Medical Oncology. Taylor and Francis, Abingdon Chapple H (2010) No Place for Dying: American Hospitals and the Ideology of Rescue. Left Coast, Walnut Creek, California Demos, Sue Ryder (2014) Dying Isn’t Working: A Time and a Place. http:// tinyurl.com/nd7vyf2 (accessed 14 April 2014) Department of Health (2008) End-of-life care Strategy: Promoting High Quality Care for all Adults at the End of Life. http://tinyurl.com/kxtsmlg (accessed 9 April 2014)
KEY POINTS
w The Liverpool Care Pathway has been withdrawn and it is not yet known what the replacement guidance will look like w This does not change the principles of good end-of-life care upon which the Liverpool Care Pathway was established w Effective and compassionate communication, and competence in the assessment of physical and psychosocial problems remain essential elements of end-of-life care for people dying at home
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Dying Matters (2013) Dying Matters: Raising Awareness of Death, Dying and Bereavement. http://tinyurl.com/qaxtf66 (accessed 9 April 2014) Ellershaw J Wilkinson S (2003) Care of the Dying: A Pathway to Excellence. Oxford University Press, Oxford Emmanuel L, Ferris F, Von Gunten C, Von Roenn J (2006) Last Hours of Living: Physiologic Changes and Symptom Management. http://tinyurl.com/ oudtzzo (accessed 9 April 2014) Faull C, Windridge K, Ockleford E, Hudson M (2012) Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter? BMJ Support Palliat Care 3(1): 91–7. doi: 10.1136/ bmjspcare-2012-000193 General Medical Council (2010) Treatment and Care Towards the End of Life. http://tinyurl.com/pfnflk5 (accessed 9 April 2014) Gertz MA, Greipp PR (2003) Hematologic Malignancies: Multiple Myeloma and Related Plasma Cell Disorders. Springer, London Hall JE, Guyton AC (2011) Guyton and Hall Textbook of Medical Physiology. Saunders, Philadelphia, PA Kitzinger C, Kitzinger J (2014) Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. J Med Ethics. doi:10.1136/medethics-2013-101799 Leadbeater C, Garber J (2010) Dying for Change. Demos. http://tinyurl.com/ prttj5m (accessed 14 April 2014) Leadership Alliance for the Care of Dying People (LACDP) (2013) Interim statement on the work of the alliance. http://tinyurl.com/nh86kg2 (accessed 10 April 2014) Mitchell M, Hollins P, Hughes J et al (2013) Consensus Statement: Liverpool Care Pathway for the Dying Patient (LCP). http://tinyurl.com/qbtsugg (accessed 10 April 2014) National Council for Palliative Care (2013) Guidance for doctors and nurses caring for people in the last days of life. http://tinyurl.com/qabpzwm (accessed 14 April 2014) National End-of-life Care Intelligence Network (NEOLCIN) (2011) Local Preferences and Place of Death in Regions within England 2010. http://tinyurl. com/nso2xd2 (accessed 10 April 2014) Neuberger, J, Aaronovitch, D, Hameed, K (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway. http://tinyurl.com/q28sbop (accessed April 2014) Nursing Standard (2013) Trusts instigate immediate bans on care pathway. August 27, p. 6. http://tinyurl.com/pjbwlsk (accessed 9 April 2014) O’Gorman SM (1998) Death and dying in contemporary society: an evaluation of current attitudes and the rituals associated with death and dying and their relevance to recent understandings of health and healing. J Adv Nurs 27(6): 1127–35 Payne S, Hardey M, Coleman P (2000) Interactions between nurses during handovers in elderly care. J Adv Nurs 32(2): 277–85 Sanderson C, Lobb E, Mowll J, Butow P, McGowan N, Price M (2013) Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study. Palliat Med 27(7): 625–31 Saunders C (1967) The Management of Terminal Illness. Hospital Medicine, London Shipman C, Gysels M, White P, Worth A, Murray S, Barclay S (2008) Improving generalist end-of-life care: national consultation with practitioners, commissioners, academics and service user groups. BMJ 337: a1720 Stephenson J (2013) Liverpool Care Pathway is scrapped after review finds it was not well used. BMJ 347: f4568 Thomas K (2003) Caring for the Dying at Home: Companions on the Journey. Radcliffe Medical, Abingdon Thomas K, Noble B (2007) Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework. Palliat Med 21(1): 49–53 Twycross R, Lichter I (2010) The terminal phase. In: Hanks G, Cherny N, Christakis N, Fallon M, Kassa S, Portenoy R, eds. Oxford Textbook of Palliative Medicine, 4th edn. Oxford University Press, Oxford Twycross RG, Wilcock A, Thorp S (2011) Palliative Care Formulary. Palliativedrugs.com, Oxford Waldrop DP (2011) Denying and defying death: the culture of dying in 21st century America. Gerontologist 51(4): 571–76 Williams AL, McCorkle R (2011) Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Pall Support Care 9: 315–25
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PALLIATIVE CARE
British Journal of Community Nursing May 2014 Vol 19, No 5
Journal of Community Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights re
End-of-life care after the Liverpool Care Pathway Laura Middleton-Green
Laura Middleton-Green is Lecturer in Palliative and End-of-Life Care, University of Bradford
T
he Liverpool Care Pathway (LCP) is a tool originally developed to spread the hospice model of care in the last days of life into other clinical areas such as hospital and the community (Ellershaw and Wilkinson, 2003). However, in 2013, intense and sustained media attention on alleged failings of care for patients on the LCP required action to be taken to ensure not only the protection of the most vulnerable patients, but the preservation of the reputation of the health-care profession generally, and those providing palliative care in particular. The report More Care, Less Pathway (Neuberger et al, 2013) recommended that the LCP be suspended from use by July 2014 in England, and December 2014 in Scotland.
trust has reduced from 50% to around 5% (Bradford and Airedale Managed Clinical Network (BAMCN), 2014). Data for use of the LCP in the community are not currently available, but anecdotal feedback is that it has almost disappeared from use. In most instances, the examples of poor care identified in Neuberger et al (2013) were directly attributable to poor implementation of the LCP rather than to errors or failings of the recommended practice contained within the pathway. However, the review did identify examples of possible falsification, where staff had documented that a difficult conversation had taken place but the family reported that this had not occurred.
Replacing the LCP
The LCP was developed as a guide to prompt best practice. Any pathway can only be as effective as the professional using it. It does not, and cannot, replace or improve clinical judgement or effective communication. A joint statement supported by 22 professional and charitable organisations (Mitchell et al, 2013) expresses concerns at the perceived rapidity of withdrawal of the pathway and the absence of high-quality replacement guidance, and endorses the recommendations within the LCP. In one respect, the withdrawal of the LCP need not affect the delivery of compassionate end-of-life care by competent professionals. Palliative care predates the LCP and is a continually evolving discipline. However, it does mean that staff who may be less confident or experienced in caring for the dying feel vulnerable and uncertain about best practice. This article aims to empower community nurses to provide the best possible care to their dying patients and to their families in the absence of nationally agreed guidance.
An alliance has been established whose aim is to produce replacement guidance on care. However, although the recommendations are that the LCP is phased out over a period of several months, anecdotal reports in many areas suggest that this has already begun (Nursing Standard, 2013; Stephenson, 2013). This may be as a result of concerns about negative media and feedback from staff and families. At present, there is no advice or guidance on what (if anything) is to replace the LCP, although the Leadership Alliance for the Care of Dying People (LACDP) is staging a series of consultation meetings nationwide with a view to developing a suitable individualised care plan template (LACDP, 2013), responding to the key recommendations of the review. Locally, there is evidence that suggests use of the LCP in the acute
ABSTRACT
This article presents a review of key issues around caring for people in the last hours and days of life. The aim is that community nurses will be able to support patients and families, and to provide and explain decisions and interventions to promote comfort and dignity based on current evidence.
KEY WORDS
w Liverpool Care Pathway w End-of-life care w Palliative care
250
Email: [email protected]
Understanding the LCP
Health care and dying Death is a natural life event. In the UK in 2010, most people died in acute hospitals, with an increasing number dying in nursing homes, and around a fifth of people dying at home (National End-of-life care Intelligence Network Home (NEoLCIN), 2011). Leadbeater and Garber (2010) identified that most people express a preference to die at home. For some, this is not possible:
© 2014 MA Healthcare Ltd
British Journal of Community Nursing May 2014 Vol 19, No 5
Journal of Community Nursing. Downloaded from magonlinelibrary.com by 137.189.170.231 on November 20, 2015. For personal use only. No other uses without permission. . All rights re
TOPIC HEADER PALLIATIVE CARE accidents, unexpected deaths and failure to respond to intensive treatments mean that hospital is the only option. However, for many, death arrives at the end of a period of dying, with a diagnosis of a known life-limiting illness such as cancer, chronic respiratory disease or dementia (Department of Health (DH), 2008). Community nurses support these people daily, visiting and supporting at home and enabling comfort at whatever stage in their life trajectory they find themselves (Thomas and Noble, 2007). However, it is well known that generalist palliative care providers find numerous challenges in this role, including difficulties in prognostication and decisionmaking at the end of life (Shipman et al, 2008).
Improving care of the dying The dying phase
When someone is approaching death, a range of physiological changes can be observed. For example, the body’s extremities may turn mottled, grey or blueish (Twycross and Lichter, 2010). Consciousness level will reduce significantly, to the point where they may be completely unrousable. Oral food or fluids become difficult to tolerate, and swallowing tablets is likely to have become impossible. One of the dangers highlighted in Neuberger’s report was the misdiagnosis of dying when a reversible cause could be responsible for these observed changes. Table 1 summarises the common reversible causes of deterioration.
Eating and drinking Many of the cases in the report described how patients were starved to death or refused fluids. For most, the natural dying process is accompanied by loss of thirst
and appetite as the body’s digestive tract and renal system cease to function (Twycross and Lichter, 2010). The LCP advises against routinised administration of intravenous hydration at the end of life unless there is a clear clinical indicator. The evidence suggests that, in renal failure, which accompanies the process of natural death, the kidneys become less able to excrete urine and patients are at risk of developing a build-up of fluid, known as pulmonary oedema, as there is nowhere else for this fluid to go (General Medical Council (GMC), 2010). Alternatively, however, for someone where they may or may not be dying—such as a patient with dementia and a severe chest infection on antibiotics—to deprive them of fluids is to potentially cause toxic build-up of other medications and dehydration to the point of death. What is hopefully clear in these two contrasting examples is that clinical judgement is of paramount importance in the decision of whether to commence, continue, or withdraw intravenous fluids. Although care of the dying is a valued part of community nursing practice, situations where such decisions need to be made are potentially highly stressful for both staff and families. Clear communication between families, nursing and medical staff is essential here, and this will be explored in the next section.
Communication Communication is an essential component of end-of-life care (Thomas, 2003; Thomas and Noble, 2007). One way in which the LCP aimed to improve care of the dying is by prompting the health-care professional to discuss the likelihood of impending death with the patient’s family, in order that they can prepare themselves practically, emotionally and spiritually (Ellershaw and Wilkinson, 2003).
Table 1. Reversible causes of deterioration
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What it is
How it presents
What causes it
How it can be treated
Hypercalcaemia
Confusion, increased pain, drowsiness and nausea, often rapid onset
Thought to affect up to 10% of patients with advanced cancer, particularly myeloma (Gertz and Greipp, 2003) and breast and prostate cancers (Cavalli et al, 2004)
Renal failure
Drowsiness, reduced urine output
Dehydration, end-stage disease, long-term use Adjustment or discontinuation of nephrotoxic of non-steroidal anti-inflammatory drugs (Hall medications and Guyton, 2011)
Opioid toxicity
Drowsiness, nausea, confusion
Excessive dose of opioids or inefficient excre- Reduce dose of opioids tion of opioids due to renal failure or dehydra- In excessive cases administer naloxone but tion under specialist palliative care supervision— risk of severe refractory pain and withdrawal agitation (Twycross et al, 2011)
Infection
Drowsiness, particularly in the elderly
Most frequently urinary tract, respiratory tract Oral antibiotics if appropriate, admission for or wound infections (Hall and Guyton, 2011) intravenous antibiotics if appropriate
Dehydration
Drowsiness, confusion, Possible swallowing problems or access to reduced urine output fluids
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Inpatient treatment with intravenous rehydration and bisphosphonates. Note: often a recurring problem and may not always be appropriate to treat. Seek advice from specialist palliative care
Oral hydration where possible, consider subcutaneous rehydration or admission for intravenous rehydration if appropriate
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PALLIATIVE CARE
Table 2. Anticipatory medications and appropriate use Symptom Pain Dyspnoea
Medication
Dose
Opioid e.g. morphine, Dependent on patient, clinical reason diamorphine for pain and any previous opioid. ‘As needed’ dose should be 1/6 of 24-hour dose of regular opioid If not on regular opioid, morphine S/C 2.5 mg
Anxiety or agitation
Midazolam
S/C 2 mg to 5 mg hourly. Midazolam has a short half-life so effect needs monitoring closely. May need to be delivered via a syringe pump if patient requires repeat doses to maintain steady plasma levels E.g. Hyoscine butylbromide S/C 20 mg, maximum 120 mg per 24 hours
Respiratory secretions
Antisecretory e.g. hyoscine butylbromide (Buscopan), Glycopyrronium bromide glycopyrronium, hyo- S/C 200 mcg scine hydrobromide Hyoscine hydrobromide S/C 400 mcg
Nausea and vomiting
Antiemetic eg haloperidol, levomepromazine, metoclopramide dependent on cause of nausea and vomiting
E.g. Haloperidol S/C 2.5 mg Metoclopramide S/C 10 mg Levomepromazine S/C 6.25 mg
NB Doses are examples only. Always ensure medical individual assessment. S/C = subcutaneous. Adapted from www.palliativedrugs.com, www.palliativecareguidelines.scot.nhs.uk
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we use (Payne et al, 2000). A distraught family member is likely to gaze blankly at the mention of signing a DNACPR form (the acronym stands for ‘do not attempt cardiopulmonary resuscitation’)—but if a gentle explanation regarding the realistic goals of care is undertaken, however hard and upsetting, the patient and their loved ones will ultimately benefit. Avoiding euphemisms such as ‘very poorly’ or ‘deteriorating’, and using clear words such as ‘dying’, are helpful for remaining clear. A helpful leaflet entitled End of Life: The Facts has been produced by Marie Curie (2011), as well as a range of information leaflets that can be freely accessed online. People only retain a small proportion of what they are told when under stress; families may need gentle revisiting of certain issues over time. Furthermore, in cases where families are large it is important to ensure that the plan of care is communicated to all. The memory of the care received by patients will remain with family members for a long time (Saunders, 1967; Williams and McCorkle, 2011). Indeed, often the nature of end-of-life care can influence the course of grief (Sanderson et al, 2013). The present author can recall speaking to a patient who was in her late seventies who described her own mother being commenced on a syringe driver. She said ‘I never knew that after that was started she would never talk again. Nobody told me they were putting her to sleep’. Her mother had died a decade earlier, and she had been haunted ever since by the (mis)conception that the health-care professionals had shortened her life by administering strong sedation via the syringe driver.
Comfort At the end of life, the maintenance of physical and emotional comfort is imperative. A person is likely to be mouth breathing and may also have complicating factors such as oral candida infection (common in those with an impaired immune system) or other mouth problems (Twycross and Lichter, 2010). Profound weakness can make it impossible for the patient to relieve their own pressure areas; however, the need to change positions regularly to prevent pressure damage needs to be carefully balanced against the potential for inflicting pain through repositioning. An example might be somebody with extensive bone metastases and severe pain on movement. In some cases, this can be remedied through administration of prescribed analgesia prior to planned interventions such as repositioning (Emmanuel et al, 2006). In other cases, modified repositioning such as tilting the bed slightly may suffice, particularly if the person is very close to death (Twycross and Lichter, 2010).
Medication Common symptoms at the end of life include breathlessness, pain, agitation and nausea (Ellershaw and Wilkinson, 2003). All patients should have required medication for symptom control available. It is important that the likelihood of these symptoms arising is assessed on an indi-
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Many of the failures of the LCP can be attributed to lack of communication between professionals and families. It is with some sense of irony that the author recalls relating to students the story of an elderly gentleman whose wife she had been visiting as a Macmillan nurse, and with whom she had remained in contact when she was admitted one night to the medical assessment ward. ‘It’s alright, she’s obviously not as poorly as we feared’, he assured me on the telephone, ‘the nurse tells me they’re taking her to Liverpool’. This brought the realisation that the patient’s husband had no idea what this meant; for him, it sounded as though his beloved wife was off to receive some new treatment format in Liverpool. The withdrawal of the LCP does not mean that community nurses should stop talking about death and dying. On the contrary, it has never been more important that we communicate clearly, sensitively and compassionately with families and carers to explain the natural process of dying. This is not an easy task in a society in which open discussion of death and dying remains taboo (O’Gorman, 1998; Chapple, 2010; Waldrop, 2011). It is essential that nurses maintain clear, sensitive and honest communication with families about what is happening. Avoiding jargon is paramount; it is notable that we become accustomed to the everyday language that
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TOPIC HEADER PALLIATIVE CARE vidual patient basis, as not all life-limiting conditions are likely to cause all of these symptoms. Where identified as a possibility, however, prescribing of anticipatory (‘justin-case’) medications can reduce the need for a crisis admission or delays in control of distressing symptoms (Faull et al, 2012). Guidance on the specific drugs for this varies by geographic location, but in general, medications in Table 2 are thought to be effective as subcutaneous injections for these symptoms. A key finding of the Neuberger report (2013) was the importance of communication and advance care planning, in preparing for and coping with the dying phase. Recommendations from the National Council for Palliative Care (2013) state that community-based patients
‘must be assessed regularly and frequently so that the end-of-life care plan can be made or adjusted, taking into account the patient’s wishes (where known) and families’ views.’ Since most deaths occur out of hours, it is essential that a patient’s needs and plan of care are communicated to providers of out-of-hours medical and nursing services. In some areas, this is being done through use of shared electronic records. In Bradford and Airedale, a unique palliative care template has been developed within this record to prompt health-care professionals to carefully document important aspects of the patients’ needs, such as preferred place of care, whether or not anticipatory medicines are available in the home, and whether a key member of the health-care team has discussed cardiopulmonary resuscitation with them (see www.palliativecare. bradford.nhs.uk).
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Case study and discussion Key decisions that may need to be made in the community setting include starting or ceasing subcutaneous fluids, and artificial nutrition such as via percutaneous gastronomies (PEG) tubes. The GMC (2010) provides some useful guidance around this. Of particular interest is the notion that, ethically, it is much less difficult for both families and health-care professionals to make a decision not to start a life-prolonging treatment than it is to withdraw such a treatment. Consider the example in Box 1: Ensuring sensitive communication and accurate documentation of the events described in Box 1 is essential. There are numerous emotional ‘flashpoints’ for both family and the health-care team that will be evident from the vignette. There are rarely clear rights and wrongs in the maelstrom of an emotionally intense end-of-life care scenario such as this. It is natural for family members to instinctively feel that the weak require hydration and nutrition in order to cope with the burden of illness (Kitzinger and Kitzinger, 2014). The vignette highlights how sensitive explanation by the health-care team enabled Tom’s wife to feel involved in decision-making, was able to see for herself the advantages and disadvantages
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Box 1. Case study Tom is a 49-year-old man with advanced motor neurone disease who lives at home with his wife, Helen. He has expressed a wish to avoid hospital admission and has an advance decision to refuse treatment in relation to intravenous antibiotics. Despite 48 hours of antibiotics via his percutaneous endoscopic gastrostomy (PEG) tube, he is continuing to deteriorate. When reviewed at home, he is semi-comatose and has audible respiratory secretions. The community nurse and GP discuss with Helen the option to discontinue his PEG feed and fluids. She becomes distressed and verbalises a fear that he would not be strong enough to fight his infection if he has not eaten food or becomes dehydrated. The team gently explain that his difficulty breathing is because of a worsening infection, that he is likely to be dying, and that the focus on maintaining comfort includes trying to make his breathing as easy as possible by reducing the fluid in his respiratory tract. They explain that they may need to use some medication to help him feel comfortable but will make sure she is aware of what these are. She remains anxious about the fluids, expressing guilt at the sense that they were ‘playing God’ by deciding to stop hydration. The nurse acknowledges her distress, and on discussion with the GP and a specialist palliative care team, they agree to initially discontinue his feed, but to continue PEG fluids at a reduced volume for 24 hours. The following morning, when the district nurse arrives, Helen explains that his breathing sounded terrible and bubbly all night, and that she now understands the importance of not allowing him to become overloaded with fluid when his lungs are so weak. Helen tearfully agrees with the decision by the nurse and GP to discontinue fluids. Over the following days, the nurse visits again, and ensures she makes time to sit and have a cup of tea with Helen. Helen often cries, and talks at length about their marriage, his illness, and her feelings. When he develops some signs of agitation, the nurse gently explains that this often happens when death is near, and after assessing carefully for reversible causes of agitation such as urinary retention or pain, she administers a subcutaneous injection of midazolam, with good effect. Tom remained settled and sleeping after that. Tom continued to deteriorate from his chest infection, becoming sleepier, and died peacefully the next night, with his wife in bed beside him.
of continued artificial hydration, and to begin to prepare herself for his death. The vignette also illustrates a compromise: had there been a point at which the patient’s welfare was threatened—for example, by showing visible signs of distress at his respiratory secretions—then the team would have been forced to act sooner to make a clinical decision here. However, Tom was semi-comatose and not apparently upset by his physical state, which allowed them to take their time over the decision so that his wife did not feel pressurised or distressed at what was happening. For Tom’s wife, this was her first experience of such a situation, and her distress, guilt and anxiety are understandable. The vignette illustrates good communication and effective and appropriate teamwork, culminating in Tom achieving the death he had asked for, in the comfort of his own home. Tom was not on the Liverpool Care Pathway. However, his wife and the team were aware that he was dying, and the conversations were frank and honest. His care did not suffer from the fact that its documentation was in the
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regular medical notes. What distinguishes good care from poor care is the quality of the communication, not the paper on which it is recorded. Communicating around dying is never easy, and it is well known that, in the UK, people feel uncomfortable talking about death and dying (DH, 2008; Dying Matters, 2013). Only around a third of people over the age of 50 have made a will or articulated their end-of-life care preferences to their loved ones (Dying Matters, 2013).
Conclusion Whatever document replaces the LCP in July, it must acknowledge the need for changes that support staff to have difficult conversations, possess good knowledge of the process of dying and potentially reversible signs of deterioration, how to make collaborative decisions and the best evidence for managing difficult symptoms. We all have the right to a good death, free from troublesome symptoms, in our chosen place of care. A report by Demos and Sue Ryder (2014) found that 63% of people in the UK would like to die in their own homes. A total of 78% of those surveyed prioritised being pain-free at the end of life, but only 27% believed that they could be pain free if dying in their own homes (Demos and Sue Ryder, 2014). Community nurses are vital in supporting people to die at home if that is their wish, but in order to do so they require support and confidence in the skills and attitudes required to deliver sensitive and appropriate end-of-life care. BJCN Bradford and Airedale Managed Clinical Network (BAMCN) (2014) Meeting minutes. http://tinyurl.com/ox9ucf2 Cavalli F, Hansen HH, Kaye SB (2004) Textbook of Medical Oncology. Taylor and Francis, Abingdon Chapple H (2010) No Place for Dying: American Hospitals and the Ideology of Rescue. Left Coast, Walnut Creek, California Demos, Sue Ryder (2014) Dying Isn’t Working: A Time and a Place. http:// tinyurl.com/nd7vyf2 (accessed 14 April 2014) Department of Health (2008) End-of-life care Strategy: Promoting High Quality Care for all Adults at the End of Life. http://tinyurl.com/kxtsmlg (accessed 9 April 2014)
KEY POINTS
w The Liverpool Care Pathway has been withdrawn and it is not yet known what the replacement guidance will look like w This does not change the principles of good end-of-life care upon which the Liverpool Care Pathway was established w Effective and compassionate communication, and competence in the assessment of physical and psychosocial problems remain essential elements of end-of-life care for people dying at home
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Dying Matters (2013) Dying Matters: Raising Awareness of Death, Dying and Bereavement. http://tinyurl.com/qaxtf66 (accessed 9 April 2014) Ellershaw J Wilkinson S (2003) Care of the Dying: A Pathway to Excellence. Oxford University Press, Oxford Emmanuel L, Ferris F, Von Gunten C, Von Roenn J (2006) Last Hours of Living: Physiologic Changes and Symptom Management. http://tinyurl.com/ oudtzzo (accessed 9 April 2014) Faull C, Windridge K, Ockleford E, Hudson M (2012) Anticipatory prescribing in terminal care at home: what challenges do community health professionals encounter? BMJ Support Palliat Care 3(1): 91–7. doi: 10.1136/ bmjspcare-2012-000193 General Medical Council (2010) Treatment and Care Towards the End of Life. http://tinyurl.com/pfnflk5 (accessed 9 April 2014) Gertz MA, Greipp PR (2003) Hematologic Malignancies: Multiple Myeloma and Related Plasma Cell Disorders. Springer, London Hall JE, Guyton AC (2011) Guyton and Hall Textbook of Medical Physiology. Saunders, Philadelphia, PA Kitzinger C, Kitzinger J (2014) Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. J Med Ethics. doi:10.1136/medethics-2013-101799 Leadbeater C, Garber J (2010) Dying for Change. Demos. http://tinyurl.com/ prttj5m (accessed 14 April 2014) Leadership Alliance for the Care of Dying People (LACDP) (2013) Interim statement on the work of the alliance. http://tinyurl.com/nh86kg2 (accessed 10 April 2014) Mitchell M, Hollins P, Hughes J et al (2013) Consensus Statement: Liverpool Care Pathway for the Dying Patient (LCP). http://tinyurl.com/qbtsugg (accessed 10 April 2014) National Council for Palliative Care (2013) Guidance for doctors and nurses caring for people in the last days of life. http://tinyurl.com/qabpzwm (accessed 14 April 2014) National End-of-life Care Intelligence Network (NEOLCIN) (2011) Local Preferences and Place of Death in Regions within England 2010. http://tinyurl. com/nso2xd2 (accessed 10 April 2014) Neuberger, J, Aaronovitch, D, Hameed, K (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway. http://tinyurl.com/q28sbop (accessed April 2014) Nursing Standard (2013) Trusts instigate immediate bans on care pathway. August 27, p. 6. http://tinyurl.com/pjbwlsk (accessed 9 April 2014) O’Gorman SM (1998) Death and dying in contemporary society: an evaluation of current attitudes and the rituals associated with death and dying and their relevance to recent understandings of health and healing. J Adv Nurs 27(6): 1127–35 Payne S, Hardey M, Coleman P (2000) Interactions between nurses during handovers in elderly care. J Adv Nurs 32(2): 277–85 Sanderson C, Lobb E, Mowll J, Butow P, McGowan N, Price M (2013) Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study. Palliat Med 27(7): 625–31 Saunders C (1967) The Management of Terminal Illness. Hospital Medicine, London Shipman C, Gysels M, White P, Worth A, Murray S, Barclay S (2008) Improving generalist end-of-life care: national consultation with practitioners, commissioners, academics and service user groups. BMJ 337: a1720 Stephenson J (2013) Liverpool Care Pathway is scrapped after review finds it was not well used. BMJ 347: f4568 Thomas K (2003) Caring for the Dying at Home: Companions on the Journey. Radcliffe Medical, Abingdon Thomas K, Noble B (2007) Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework. Palliat Med 21(1): 49–53 Twycross R, Lichter I (2010) The terminal phase. In: Hanks G, Cherny N, Christakis N, Fallon M, Kassa S, Portenoy R, eds. Oxford Textbook of Palliative Medicine, 4th edn. Oxford University Press, Oxford Twycross RG, Wilcock A, Thorp S (2011) Palliative Care Formulary. Palliativedrugs.com, Oxford Waldrop DP (2011) Denying and defying death: the culture of dying in 21st century America. Gerontologist 51(4): 571–76 Williams AL, McCorkle R (2011) Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Pall Support Care 9: 315–25
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