Palliative and end-of-life care is an important aspect of nursing. Around 500 000 people die in England every year and it is expected that, by 2040, this will rise to 590 000 (Dying Matters, 2020). The main aetiology of death is stroke and heart failure; however, one in four people in the UK will die of cancer (Office for National Statistics (ONS), 2020). It should also be appraised that due to an increasing and ageing population, a significant proportion of older adults will be living with comorbidity and therefore an increase in deaths due to comorbidity and frailty will likely pertain as a leading course of mortality in the coming years (National Institute for Health and Care Excellence (NICE), 2016). In response to this, nurses need to be managing and delivering services that can identify and care for people who require palliative care and are likely to be approaching the end of their lives (NICE, 2019).
Palliative and end-of-life care
The term palliative care is sometimes referred to as end-of-life care, but they are not, strictly speaking, the same. Marie Curie (2018) has sensitively explained the difference between the two terms. Palliative care is treatment, care and support for people with a life-limiting illness. The aim of palliative care is to support the patient to have a good quality of life, which includes being as well and active as possible for the time the person has left. This can involve:
Similarly, end-of life care also focuses on treatment, care and support of patients, but is for people who are thought to be in the last year of their life. This includes people with:
Malignant diseases such as cancer often follow a predictable trajectory of deterioration, which therefore makes care planning easier to anticipate. However, some illnesses can be problematic in predicting timeframes of mortality, particularly in patients who have non-malignant life-limiting illnesses. For example, chronic obstructive pulmonary disease, where it can be challenging to appraise if the patient is having an acute exacerbation or if they are at the end of life (Cohen-Mansfield et al, 2018). Therefore, it is important to understand that some people might only receive end-of-life care in their last weeks, days or hours. Every effort should be made to ensure that wishes and preferences, such as the person's preferred place of care or advance decisions to refuse treatment, are sensitively discussed and documented in advance care plans as early as possible with patients and family members (National Palliative and End of Life Care Partnership, 2015).
Research highlighted by Dying Matters (Shucksmith et al, 2013) showed disparity between where people would wish to die and their preferred place of care, and actual place of death. This research found that around 70% of people would choose to die at home; however, 50% of people were dying in hospital. Yet, there appears to be a downward trend in patients dying in hospital. According to Public Health England (2018), in 2004 57.9% of patients died in hospital, whereas in 2016 this number had fallen to 46.9% with more people dying at home (23.5%) or in their preferred place of care, ie a nursing home (21.8%) or hospice (5.7%). However, there was significant variation across the country by district and local authority, with the proportions of deaths in hospital ranging from 34.2% to 63.1% (ONS, 2020). Additionally, the second preference of patients to dying at home was to ensure their symptoms, such as pain, are well controlled (Hoare et al, 2015). Such fears surrounding symptom control at the end of life often lead to patients entering hospitals for care. However, patients should be informed of care services that can adequately manage symptom control at their preferred place of care (Department of Health, 2012).
Nurses have the greatest opportunity to influence the end-of-life process for patients due to their close relationships with patients and their families (Ramplin, 2019). Community and home nursing services are best placed and crucial to supporting patients who wish to die in their own homes (Ramplin, 2019). Therefore, it is imperative that community nurses are sufficiently prepared and upskilled in end-of-life care discussions and symptom management to support patients. To achieve good quality end-of-life care, nurses will have to be both confident and competent in having open and honest discussions regarding advance care planning to ensure that the wishes and preferences of the patient are communicated and respected (National Palliative and End of Life Care Partnership, 2015).
Advance care plans
Advance care planning permits the patient to state their preferred place of care and what future treatments they would accept, particularly if their mental capacity is altered towards the end of life or they are unable to make decisions for themselves (Hamilton, 2017). Such decisions could mean that the patient will allow for active treatment at home such as for infection, emesis, or pain control, but would not want to attend hospital. These conditions can be managed via a number of administration routes at home. For example, if a patient needs medications normally administered orally, but this is problematic as a result of pathophysiological changes, these medicines can be delivered in the home subcutaneously either by injection for breakthrough relief of symptoms or continuously over 24 hours via a pump/syringe driver (Thomas and Barclay, 2015).
In some cases, where there is a palliative medical emergency that cannot be reversed at home, such as hypercalcemia, haemorrhage, spinal cord compression and neutropenic sepsis, then the patient would be encouraged to attend hospital for treatment (NHS Scotland, 2014). If the patient is incapacitated due to the medical emergency then a decision in the best interests of the patient would be made in conjunction with a doctor, nursing team and family (NICE, 2018). However, potential interventions should be assessed to ensure they are not more burdensome than beneficial (Mathew et al, 2016). An advance care plan can prevent a patient who is actively dying from being admitted to hospital, if an admission to hospital would not change the outcome and would likely lead to the patient dying in hospital.
Syringe drivers
A syringe driver is useful for symptom control when oral administration is not possible and repeated subcutaneous injections or administration of medication by other routes is inappropriate, ineffective or impractical. Although syringe drivers are primarily used in end-of-life care they may also be appropriate for patients who are not imminently dying. Consider using a syringe driver for the following:
The goals for administering medication using a syringe driver should be discussed with the patient and any concerns addressed. It is important to explain to patients and family members that, although the syringe driver may allow symptoms associated with the dying process to be helped, it will not expedite the dying process. Patients and family members should be assured that the decision to start a syringe driver is not irrevocable and if the patient's symptoms improve this may be stopped (Thomas and Barclay, 2015). See Table 1 for advantages and disadvantages of using syringe drivers in end-of-life care.
Advantages | Disadvantages |
---|---|
|
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The most common portable syringe driver nurses will encounter in use in the UK in homes and care settings requires refilling every 24 hours and administers consistent therapeutic drug levels, set in millilitres (ml) per hour. Safety features include a mechanism to stop the infusion if syringe is not properly and securely fitted, alarms that activate if the syringe is removed before the infusion is stopped, and an internal log to record pump activity.
Medications suitable for syringe drivers
An understanding of the drugs that can be used in syringe drivers and the therapeutic effects is an essential component of end-of-life care (Table 2). Nurses must safeguard the interest of patients at all times by accepting responsibility only for duties in which they are competent and able to practice safely without supervision (Nursing and Midwifery Council, 2018). It is suggested that theoretical knowledge alone is insufficient and nurses must be deemed competent through locally agreed competency frameworks that incorporate best practice and requirements for continuous training (O'Brien, 2012).
Drug | Indications | Dose |
---|---|---|
Opioids for pain relief | ||
Diamorphine |
Opioid-responsive pain, breathlessness | 5–10 mg/24 hours, if no opioid before |
Morphine sulphate |
Opioid-responsive pain, breathlessness | 5–10 mg/24 hours, if no opioid before |
Oxycodone | Opioid-responsive pain, breathlessness | 2–5 mg/24 hours, if no opioid before |
Anti–emetics | ||
Cyclizine |
Nausea and vomiting due to mechanical bowel obstruction, raised intracranial pressure and motion sickness | 50–150 mg/24 hours |
Haloperidol |
Opioid for metabolic-induced nausea, delirium | 2–10 mg/24 hours |
Levomepromazine |
Complex nausea, terminal delirium/agitation | 5–25 mg/24 hours as anti-emetic |
Metoclopramide |
Nausea and vomiting (peristaltic failure, gastric stasis/outlet obstruction) | 30–100 mg/24 hours |
Anticholinergics | ||
Glycopyrronium bromide |
Chest secretions or colic | 0.6–1.2 mg/24 hours for bowel colic and excessive secretions |
Hyoscine butylbromide (Buscopan) |
Chest secretions, bowel obstruction (colic, vomiting) | 60–300 mg/24 hours for bowel colic |
Hyoscine hydrobromide |
Chest secretions | 1.2–2 mg/24 hours for bowel colic and excessive secretions |
Sedatives | ||
Midazolam |
Myoclonus, seizures, terminal delirium/agitation | Initially 10–20 mg/24 hours, adjusted according to response; usual dose |
Steroids | ||
Dexamethasone |
Brain metastases, nausea and vomiting, anorexia, bowel obstructive symptoms, emergency management of suspected superior vena cava obstruction (SVCO) or malignant spinal cord compression (MSCC) | Dose depending on indication, ranges from 2 mg to 16 mg for emergency management of SVCO or MSCC. Contact specialist palliative care team for advice |
Medications are mixed with water for injection (sterile water) and normal saline (NaCl 0.9%). Sterile water is compatible with most medicines except levomepromazine, ondasetron, hyoscine butylbromide and octreotide, which should be diluted with normal saline. One of the advantages of syringe drivers is that two or more drugs (occasionally up to four) can be mixed together and infused. Knowledge of compatibility of drugs is essential (Table 3) and observation of physical compatibility such as precipitation, discolouration or cloudiness of the infusion mixture (Thomas and Barclay, 2015). Seek pharmacy advice for three or more drugs and follow local procedure guidelines.
Name of drug | Morphine sulphate | Diamorphine | Oxycodone |
---|---|---|---|
Cyclizine* | ✓ | ✓ | ✓ |
Haloperidol | ✓ | ✓ | ✓ |
Glycopyrronium | ✓ | ✓ | ✓ |
Hyoscine butylbromide | ✓ | ✓ | ✓ |
Hyoscine hydrobromide | ✓ | ✓ | ✓ |
Levomepromazine | ✓ | ✓ | ✓ |
Metoclopramide | ✓ | ✓ | ✓ |
Midazolam | ✓ | ✓ | ✓ |
Setting up a syringe driver
Equipment
Procedure
Conclusion
Palliative and end-of-life care are an essential part of nursing care. With more people choosing to die at home it is important that nurses are competent in managing this process. End-of-life care should always be patient-centred and include advance care planning when considering treatment. Syringe drivers are useful when the oral route of administration is not possible or absorption of medication is not optimal. It is important that discussions about medication management occur throughout the dying process and are tailored to meet individual needs.