JCN

Dr Sally Lawton, Dr Gordon Linklater, Dr Margaret Denholm & Lisa Macaulay discuss the main reasons why primary care-based nurses phone a specialist palliative care advice Une.

PALLIATIVE CARE/EDUCATION

Care of the dying: advice for primary care nurses

rimary care teams play a significant role in the care of palliative patients, with 90 per cent of patients being cared for at home in their last year of life (Mitchell, 2003). However, there are occasions when primary care staff will need help and advice from specialist palliative care services. Indeed, it has been noted recently that such support improves the care they give to patients and families (Audit Scotland, 2008).

available evidence and specialist clinical practice. We hope this article will reassure primary care nurses that their questions and challenges are not unusual and are shared by others. The common issues have been grouped into two sections, namely the dying patient and the use of syringe drivers.

The dying patient

"My patient is dying. He can no longer swallow his regular oral strong opioid. Which opioid should we put in his syringe driver?" The simple answer is 'morphine' (World Health Organization, 1986; Palliative Care Formulary, 2007, p.274). Most patients who are actively dying will tolerate morphine in their syringe driver, even if they have been on one of the alternative opioids orally. There has been an increase in the number of strong opioids available for both oral and parenteral administration. In the past, most patients were on oral morphine switching to parenteral diamorphine when no longer able to swallow. It is now commonplace to see patients on oral oxycodone, hydromorphone or methadone or transdermal' fentanyl or buprenorphine. Parenterally we can choose from morphine, diamorphine, oxycodone, hydromorphone, methadone and alfentanyl. We have many more options, but also many more opportunities for confusion and mistakes. According to Falln and McConnell (2007) there is no robust evidence that any one agonist is more effective than another. "How much morphine should we put in his syringe driver?" This is more complicated and needs discussion about the individual clinical situation. Oral to parenteral conversion tables exist, for example in the British National Formulary (BNF, 2008), but they do not take into account the clinical condition of the patient. Many patients actually need less analgesia in the terminal phase (both because they do not move about as much as previously and because they become biochemically 'dry'

In this article, we will discuss the main reasons why primary care-based nurses phone a specialist palliative care advice line. The advice line was established in 2000 within an NHS specialist palliative care unit based in the Grampian region of Scotland. Its aim is to provide support for healthcare professionals caring for palliative patients. Since its launch, 1146 calls have been logged, with a record made of each call. A specially designed paper record is used to collect details of each call made to the advice line. This includes patient details, the reason for the call and any advice that is given. Demographic data, but not patient identifiable details are entered on to a database. The free-text advice is analysed using a qualitative approach of data coding and display (Miles & Huberman, 1994). General practitioners and hospital doctors account for 787 of the calls, with community based nurses making 135 calls. We collate the main reasons why professionals call the advice line as way of improving our educational and professional support of primary care colleagues. This enables us to tailor education to relevant clinical issues. The remaining calls to the advice line were made by hospital nurses, patients and carers. In this educational article, we outline the commonly asked questions along with answers in order to provide practical advice and guidance. One of the real issues in palliative care is the lack of randomised clinical trial evidence (Keeley et al, 2007). therefore, the advice given in this paper is based on the best

Sally Lawton RGN, NDN (Cert), RCNT, RDNT, MA, PhD, LL.M, Senior Lecturer in Palliative Care (Nursing), NHS Grampian Gordon Linklater MBChB, FRCP, DipMedEd, Consultant in Palliative Medicine, NHS Grampian Margaret Denholm MBChB, MRCGP, DipPall.Med, Specialist Registrar, Palliative Medicine, NHS Grampian Lisa Macaulay DipHE Nursing, Research and Development Nurse, Department of Palliative Medicine
Article accepted for publication: August 2008

journal of Community Nursing February 2009, volume 23, issue 2

PALLIATIVE CARE/EDUCATION watching out for opioid unresponsive pain and opioid toxicity. If the boluses are effective and are needed frequently then a syringe driver with morphine can be started. "YJhat is the correct bolus morphine dose for my patient on a 25 microgram fentanyl patch?" Many people do not realise how 'strong' fentanyl patches are (Feathers & Faull, 2007). For example the 25 microgram per hour patch is equivalent to approximately 90mg of oral morphine per day. The correct morphine sub-cutaneous breakthrough dose is therefore about 7.5mg. can be prescribed for the dying patient who has excessive secretions?" Hyoscine hydrobromide 400mcg subcutaneously should be given as a bolus. If it is required on an ongoing basis, 1200 micrograms per 24 hours can be added to the syringe driver. Hyoscine butylbromide or glycopyrronium are less sedative suitable alternatives. sub-cutaneous butterfly include the anterior chest wall, upper arm or thigh (Dickman, Littlewood & Varga, 2002). Occasionally, the needle can be inserted over the region of the scapula. The advice is to avoid oedematous limbs, bony prominences, skin folds, skin that has been irradiated and breast tissue. "What should we add to the syringe driver?" In terminal care, three commonly used drugs are morphine, midazolam and hyoscine hydrobromide (Costello et al, 2008). If the syringe driver has been started due to persistent nausea and vomiting, an appropriate anti-emetic should be added. "Which diluent should be used?" Water for injection and 0.9% saline are the commonest diluents, but the ideal diluent has not been identified according to Johnson (2007). In most cases, 0.9% saline should be used as it makes an isotonic solution causing least site irritation. However, there are exceptions to this as cyclizine and high concentrations of diamorphine (>40mg/m]) must be mixed with water for injection. "Wlxich drugs are compatible in a syringe driver?" Any combination can be checked with the local palliative care unit or the Medicines Information Service via the community pharmacist. Compatibility tables are available in the Palliative Care Formulary or on-line at www.palliativedrugs.com (you can register on line to get further information). The more drugs mixed together in a syringe driver the greater the risk of incompatibility Use the minimum number of drugs in the infusion, up to a maximum of three. "There is crystallisation in the infusion what can be done?" If there is visible crystallisation or the mixture becomes cloudy, the infusion must be discontinued and removed. Certain drug mixes are more likely to cause these problems. You will need to check drug compatibilities whether you have used the correct diluent (especially with cyclizine) and ensure maximal dilution. Other causes include the exposure to excessive heat or UV light. "The prescription is too big for the 20 ml syringe. Can 1 use a 30 ml syringe?" The Graseby M26 Syringe pump can use 10,20 and 30 ml syringes allowing larger

with reduced renal clearance (Scottish Intercollegiate Guidelines Network (SIGN), 2008) and therefore we often recommend a conservative switch from oral to parenteral. Furthermore, community nurses may find themselves in the difficult situation where they may think that a GP's prescription is wrong. Knowing how to access information can help in these situations. We have previously shown that educational interventions increase confidence in knowing who to ask for help (Carroll & Lawton, 2006). "He has been on the morphine syringe driver for a couple of days now. He is restless and looks sore. How much should we increase the morphine by?" Here the advice is often 'don't increase the morphine!' We would only recommend increasing the background morphine (typically by 30-50 per cent) if there was a good history of morphine boluses being effective for the pain and no symptoms or signs of opioid toxicity such as vivid dreams, hallucinations, myoclonus, restlessness, (Quality Improvement Scotland, 2004). Common causes of morphine unresponsive pain at the end of life include urinary retention and faecal impaction. Restlessness is frequently a sign of opioid toxicity rather than pain. Midazolam is useful in this situation. If the patient responds to an initial bolus of 2.5mg sub-cutaneously, then 10-15mg Midazolam/24 hours can be added to a syringe driver. "My patient is dying and is really sore when we move him. V/hat should 1 do?" A bolus dose of midazolam (2.5mg sub-, cutaneously), 15 - 20 minutes prior to movement will help. Patients are often sore on movement due to muscle stiffness rather than cancer pain. (A morphine bolus can be given at the same time as the midazolam if necessary). "My patient is dying but has afentanyl patch on. What should 1 do?". If the patient's pain is controlled then leave the patch on. If the patient's pain is not controlled then leave the patch on. Do not take the patch off or try to add a stronger patch. It takes a long time for the fentanyl levels to change after a patch increase or decrease. Fentanyl patches are therefore contraindicated for trying to control uncontrolled pain (Palliative Care Formulary, 2007). If a dying patient with a fentanyl patch on is sore then they should be given boluses of morphine.
Journal of Community Nursing

The use of syringe drivers

We should make it clear that the nurses were enquiring about Graseby MS26 syringe drivers. "When should a syringe driver be started?" Syringe drivers deliver drugs by subcutaneous infusion and are only indicated when a patient is unable to take their oral medication due to dysphagia, persistent nausea and vomiting, bowel obstruction or reduced conscious level (SIGN, 2008). "Can you remind me how to set up a syringe driver?" This question reflects one of the challenges of community nursing, namely that equipment may be used infrequently and in this situation, it had been a number of months since this district nurse had used a syringe driver. The infrequency of use of equipment such as syringe drivers was noted as potentially problematic by Hayes et al. (2005). The equipment requirements, drugs and diluents, paperwork and patient preparation were discussed. Guidelines are usually available locally and can be accessed either through a local palliative care unit or from a national web resource such as Scotland's health on the web (www.show.scot.iihs.uk). "Where should the sub-cutaneous infusion be sited?" Common sites for the insertion of the

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PALLIATIVE CARE/EDUCATION volume infusions. Review the reason for the larger volume with the prescriber, considering the need for each drug and the dose prescribed. A suitable lower volume alternative may exist. In addition, specialist advice may be helpful in seeking alternatives. "The patient has three drugs in their syringe driver and has just been prescribed a fourth - how should this be given?" Try to avoid mixing more than three drugs in a syringe driver because of the risk of incompatibility. Often, the prescription can be rationalised by stopping unnecessary medication. A useful tip is to remember that dexamethasone and levomepromazine have a long duration of action and can be administered as a bolus sub-cutaneous injection once daily, eliminating the need for a syringe driver. Occasionally, when four drugs are required, the infusion can be split between two syringe drivers. "What do I do when a prescription is changed mid-way through an infusion?" You will need to discontinue the current infusion, discard the contents of the syringe and set up a new infusion. Although this may seem to be a waste of resources, when the costs of extra visits are factored in, it might be cost effective overall. "There's no syringe driver available and the patient is dying - what can we do?" Syringe drivers are helpful but not essential to good symptom control. A butterfly needle inserted subcutaneously used to administer regular bolus injections is as effective as a syringe driver, provided there is adequate nursing support. "/ have noticed that the syringe has not delivered the set dose of medication, what should I do?" The battery is probablyflat!It will need to be replaced. The patient may well need to have breakthrough doses to ensure that their symptom control is maintained until the syringe driver infusion is reestablished. "The infusion sites are becoming red and irritated regularly. What should 1 do?" We recommend that the infusion sites are rotated, so that the same area is not constantly in use. In the case of site irritation, use a Sof-set giving set. The diluent should also be reviewed. Water for injections is compatible with a large number of drugs but 0.9% saline 8

produces a more isotonic, less irritant solution. In addition, assess the volume and dilution of the contents of the syringe. To avoid having too concentrated a solution, use the largest available syringe. "What rate should the syringe driver be set at?" We have noticed the possible confusion caused when different models are used within the same region. Our advice would be to avoid altering the set rate of the syringe driver from infusing over a 24 hour period. "/// should not alter the rate of infusion, can 1 change the time when we re-load the syringe driver to suit the patient's needs?" Yes, as the syringe driver is providing a continuous infusion, you can change it earlier than the 24 hour period, remembering to note how much has been discarded. In addition, although it was not a specific advice line question, we are frequently asked during teaching sessions about the boost button facility on the Graseby M26. We strongly advise against using this button for breakthrough analgesia as a single boost administers too small a dose to be effective (Johnson, 2007). The questions and answers we have provided, particularly about syringe drivers, illustrates a potential loss of confidence, especially if there is infrequent use of such equipment. There are additional concerns about the potential for confusion when a number of different models of syringe driver are used within an area.

http://www.show.scot.nhs.uk then use search facility for palliative care guidelines http://www.nhsclinicalguidance. scot.nhs.uk/palliative_care/default.asp - this contains the NHS Grampian palliative care intranet

References
Audit Scotland (2008) Review of palliative care services in Scotland Audit Scotland, Edinburgh British National Formulary (2008) British National Formulary issue 55 BMJ Group and RPS Publishing, London Carroll, D., Lawton, S. (2006) "A primary care -based palliative care education project in Aberdeen: the first year" Education for Primary Care 17 ;5:501 - 505 Costello, J., Nyatanga, B., Mula, C, Hull, J. (2008) "The benefits and drawbacks of syringe drivers in palliative care" International journal of Palliative Nursing 14 ;3:139 144 Dickman, A., Littlewood, C.,Varga, J. (2002) The syringe driver: continuous infusions in palliative care Oxford University Press Oxford Falln, M., McConnell, S. (2007) "Management of adverse effects" in Forbes K (ed) Opioids in cancer pain Oxford University Press, Oxford Feathers, L., FauU, C. (2007) "Transdermal opioids" in Forbes K (ed) Opioids in cancer pain Oxford University Press, Oxford Hayes, A., Brumley, D., Habegger, L., Wade, M., Fisher, J., Ashby. M. (2005) "Evaluation of training on the use of Graseby syringe drivers for rural non-specialist nurses" International Journal of Palliative Nursing 11 ;2:84-92 Johnson, J. (2007) "Parenteral Opioids" in Forbes K (ed) Opioids in cancer pain Oxford University Press, Oxford Keeley, P, Waterhouse, E., Noble, S. (2007) "The evidence base of palliative medicine: is inpatient palliative medicine evidence based?" Palliative Medicine 21:623 - 627 Miles, M., Huberman, A. (1994) Qualitative Data Analysis Sage, Thousand Oaks Mitchell, G. (2003) "Dying in the community: general practitioner treatment of community-based patients analysed by chart audit" Palliative Medicine 17: 289 - 292 http://wWw.Palliativedrugs.com [accessed September l^t 2008] Quality Improvement Scotland (2004) The management of pain in patients with cancer QIS, Edinburgh Scottish Intercollegiate Guidelines Network (2008) SIGN CuideUne44: control of pain in patients with cancer SIGN, Edinburgh Twycross, R., Wilcock, A. (2007) Palliative Care Formulary, Palliativedrugs.com Ltd, Nottingham World Health Organization (1986) Cancer Pain Relief WHO, Geneva

Conclusion
The issues that we have collated from our advice line records highlight the daily, practical problems that community nurses encounter when caring for palliative patients. As noted in SIGN guideline 106 (SIGN, 2008), primary care staff are interested to know more about p^in and symptom control in palliative care. Access to specialist advice may provide a source of confidence or confirmation for nurses who may be working in isolation.

Useful resources
Falln M and Hanks G (eds) (2006) ABC of palliative care 2"'' edition. Blackwell Press, Oxford Watson M. Lucas C. Hoy A. Backl. (2005) Oxford Handbook of palliative care part 1 Oxford University Press, Oxfordhttp: / / www.Palliativedrugs.com

Journal of Community Nursing February 2009, votume 23, issue 2