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Department of Health. End of life care strategy: fourth annual report. 2012. https://tinyurl.com/y3gmdzhf (accessed 10 September 2020)

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What are palliative care and end of life care?. 2018. https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care (accessed 10 September 2020)

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NHS Highland, NHS Greater Glasgow and Clyde. Syringe pump guidelines CME McKinley T34 (ml/hour): For use within Argyll and Bute CHP and Clyde. 2007. https://tinyurl.com/y6bptgxh (accessed 10 September 2020)

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Advance care planning and syringe drivers in palliative and end-of-life care

24 September 2020
Volume 29 · Issue 17

Abstract

This article discusses the practicalities of syringe drivers (subcutaneous continuous infusion pumps) for symptom control in patients requiring palliative or end-of-life care, which may form part of an advance care plan. It includes a discussion of palliative and end-of-life care, advance care planning, and when a syringe driver might be beneficial for the patient. It also provides step-by-step clinical guidance on setting up a syringe driver.

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:

  • Planning for future care with a detailed advance care plan that expresses the person's individual needs and wishes
  • Controlling physical symptoms, such as pain
  • Emotional, spiritual and psychological support needs
  • Social care needs, including assistance with washing, dressing or eating
  • Support for the person's carers, family and friends.
  • 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:

  • Advanced, progressive, incurable conditions
  • Frailty and comorbidity that places them at increased risk of dying within the next 12 months
  • Existing conditions whereby they are at risk of dying suddenly from acute crisis. (NICE, 2019).
  • 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:

  • Persistent vomiting
  • Reduced consciousness
  • Dysphagia
  • Weakness
  • Bowel obstruction or malabsorption
  • Significant tablet burden
  • Unwilling to take tablets by mouth
  • Unable to absorb oral medications
  • For patients who have head and neck lesions or surgery
  • Death rattle in unconscious patient
  • Poor symptom control with oral drugs
  • Improve patient comfort (O'Brien, 2012; NHS Scotland, 2014; Dougherty and Lister, 2015).
  • 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
  • Repeated injections are not required
  • Symptom control with a combination of drugs
  • 24-hour symptom control and comfort without peaks and troughs
  • Only needs reloading once every 24 hours
  • Patients can remain ambulant
  • Staff training required
  • Possible inflammation and pain at infusion sites and increased risk of infection
  • Skin site availability may become a problem in emaciated patients
  • Requires daily visits from district nurses and other health professionals
  • Not all drugs can be given subcutaneously
  • 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
    Diamorphine5 mg, 10 mg, 30 mg, 100 mg, 500 mg powder ampoules Opioid-responsive pain, breathlessness 5–10 mg/24 hours, if no opioid beforeCan be diluted in a small volumePreferred for high opioid doses
    Morphine sulphate10 mg, 30 mg in 1 ml60 mg in 2 ml Opioid-responsive pain, breathlessness 5–10 mg/24 hours, if no opioid beforeFirst-line opioid analgesic
    Oxycodone Opioid-responsive pain, breathlessness 2–5 mg/24 hours, if no opioid beforeSecond-line opioid analgesic if morphine/diamorphine not tolerated
    Anti–emetics
    Cyclizine50 mg in 1 ml Nausea and vomiting due to mechanical bowel obstruction, raised intracranial pressure and motion sickness 50–150 mg/24 hoursCan cause redness, irritation at the siteIncompatible with normal saline, always use water for injection
    Haloperidol5 mg in 1 ml10 mg in 2 ml Opioid for metabolic-induced nausea, delirium 2–10 mg/24 hours
    Levomepromazine25 mg in 1 ml Complex nausea, terminal delirium/agitation 5–25 mg/24 hours as anti-emetic100 mg/24 hours as sedativeInitially 12.5–50 mg/24 hours, titrated according to response (doses above 25 mg should be given under specialist supervision)Second-line sedative if midazolam ineffectiveIf purple or yellow discolouration discard—this can be caused by light exposure
    Metoclopramide10 mg in 2 ml Nausea and vomiting (peristaltic failure, gastric stasis/outlet obstruction) 30–100 mg/24 hours
    Anticholinergics
    Glycopyrronium bromide200 mcg in 1 ml600 mcg in 3 ml Chest secretions or colic 0.6–1.2 mg/24 hours for bowel colic and excessive secretionsSecond-line; non-sedativeLonger-duration action than hyoscine
    Hyoscine butylbromide (Buscopan)20 mg in 1 ml Chest secretions, bowel obstruction (colic, vomiting) 60–300 mg/24 hours for bowel colic20–120 mg/24 hours for excessive respiratory secretionsFirst-line; non-sedative
    Hyoscine hydrobromide400 mcg in 1 ml600 mcg in 1 ml Chest secretions 1.2–2 mg/24 hours for bowel colic and excessive secretionsThird-line; sedativeCan precipitate delirium
    Sedatives
    Midazolam10 mg in 2 ml Myoclonus, seizures, terminal delirium/agitation Initially 10–20 mg/24 hours, adjusted according to response; usual dose20–60 mg/24 hours20–40 mg/24 hours for convulsions in palliative care
    Steroids
    Dexamethasone3.3 mg in 1 ml 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
    Source: Joint Formulary Committee, 2020; NHS Scotland, 2020

    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
    * Use water for injection as diluent for cyclizine Source: Joint Formulary Committee, 2020; NHS Scotland, 2020

    Setting up a syringe driver

    Equipment

  • Syringe driver
  • Luer lock syringes—manufacturers recommend the size of the syringe that should be used with their devices. Syringe drivers are calibrated in ml per hour. It is important to establish the final volume required in the syringe before choosing the size
  • Drug label
  • Butterfly needle or infusion set cannula
  • Transparent surgical dressing
  • Syringe driver case and battery
  • Subcutaneous infusion set
  • Water for injection or normal saline
  • Medicines
  • Sharps box
  • Prescription and monitoring chart
  • Non-sterile gloves
  • Skin cleansing agent.
  • Procedure

  • Explain the rationale for setting up the syringe driver and the procedure to the patient and relatives
  • Obtain consent
  • Wash hands
  • Check patient name and NHS number
  • Ask the patient if they have any known allergies
  • Check the battery for the syringe driver. If the battery is below 40% at the start of the infusion discard and use a new battery
  • Set rate—this is the rate at which the syringe plunger will be moved forward by the motor in ml/hour (McKinley T34) Special attention should be paid to the rate if the machine has returned from servicing
  • Test the start button—this must be tested before administering the infusion. Press the start/test button and hold it down. Releasing the button starts the syringe driver. If the alarm does not sound the system is not safe to use (O'Brien, 2012)
  • Establish the final volume required in the syringe. It is considered good practice to make the solution as dilute as possible to reduce the likelihood of problems with drug compatibility and minimise site irritation. Check with compatibility tables and pharmacist if advice is needed (NHS Highland and NHS Greater Glasgow and Clyde, 2007)
  • Select syringe size. Make sure that the syringe is a good quality and Luer lock type (attached by twisting action) to avoid disconnection (O'Brien, 2012). The dimensions of syringes will vary depending on the manufacturer
  • Draw up the medication—make sure to check which diluent to use and drug compatibility
  • Write the medication on the label along with date, time and signature of nurse
  • Prime the line and extension set. This must be primed to the tip of the needle (O'Brien, 2012). This needs to be done manually and prior to needle/cannula insertion. Measure the volume prior to priming to the set. This will ensure that correct concentration levels are administered as prescribed. If replenishing the driver the infusion will finish early the following day. If the prescription is changed the line needs to be re-primed (NHS Highland and NHS Greater Glasgow and Clyde, 2007)
  • Re-explain procedure and check that the patient is in a comfortable position
  • Wash hands and put on gloves
  • Use skin cleansing agent to decontaminate the skin around insertion site using skin cleansing agent (Gabriel, 2015) and allow 30 seconds to dry (see Figure 1 and Box 1 for suitable and unsuitable infusion sites)
  • Gently pull the protective sheath away from the stylet
  • Keep the skin taut over the insertions site and insert at a 45-degree angle
  • Insert the needle/cannula into subcutaneous fat to enhance absorption of medication
  • Remove stylet and dispose of immediately in a sharps container
  • Connect primed infusion set and start infusion
  • Cover cannula with a transparent surgical dressing
  • Ensure that the device is not placed too far above the level of the infusion site. This will increase the risk of a bolus delivery (O'Brien, 2012)
  • Place the syringe driver into a locked box to avoid the pump being tampered with or damaged during infusion
  • Dispose of equipment as per organisational policy
  • Remove gloves and wash hands
  • Ensure that the patient is comfortable
  • Check the last service date of the syringe driver. Record the serial number of the syringe driver, record the syringe make and size. Document the flow rate in ml per hour, battery percentage, diluent name and batch number. Record the drug name and batch number, total volume in the syringe (ml) of drugs and diluent. Document the site used and appearance, syringe and signature of persons preparing and checking the syringe driver (NHS Highland and NHS Greater Glasgow and Clyde, 2007)
  • The pump should be checked at each visit in the community and primary care settings and every 4 hours in hospital and hospice settings. Record the time and date of check
  • Check the infusion site for: redness, swelling, discomfort/pain, leakage of fluid
  • Record any findings. It may be necessary to re site the cannula if the infusion site has been compromised
  • Figure 1. Subcutaneous infusion sites

    Sites not suitable for a subcutaneous infusion

  • Skin folds—the infusion site cannot be easily observed and the device cannot be safely secured. There is also a potential risk of impaired absorption.
  • Limb oedema/lymphoedema—this is an infection risk and can impair absorption
  • Previously irradiated skin—impaired blood supply could reduce absorption, increased infection risk and damage to dry/delicate skin
  • Bony prominences—reduced subcutaneous tissue, impaired absorption and device difficult to safely secure
  • Near joints/areas of flexion—uncomfortable for the patient and a greater potential for the device to become dislodged
  • Dry skin areas—increased potential for skin breakdown and risk of infection
  • Infected/broken skin—increased risk of infection
  • Source: Best Practice Journal, 2012

    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.

    KEY POINTS

  • End-of-life care is a particular type of palliative care providing support and symptom control for those people thought to be in the last year of their life, although unpredictable disease trajectories can mean some people might only receive end-of-life care in their last weeks, days or hours
  • Advance care plans allow the patient to state their preferred place of care and the future treatments they would wish to have or avoid
  • A syringe driver—which allows drugs to be delivered subcutaneously at a constant controlled rate—is useful for symptom control when oral administration is not possible or effective, and repeated injections would be inappropriate or impractical
  • CPD reflective questions

  • How would you communicate the difference between palliative care and end-of-life care with a patient and their family?
  • How does advance care planning ensure the wishes and preferences of the patient and family can be met?
  • What clinical indications would be appropriate for considering the use of a syringe driver for symptom management?
  • Which sites are not suitable for subcutaneous infusion? Can you provide a rationale to your answers?