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WESSEX PALLIATIVE PHYSICIANS THE PALLIATIVE CARE HANDBOOK Advice on clinical management SIXTH EDITION CONTENTS Introduction 3 General principles of symptom management 4 Guidance from NICE on Specialist Palliative Care 4 Pain 5 Use of strong opioids 7 Opioid preparations 9 Relative potencies of various opioid analgesics 10 Opioids and renal or hepatic impairment 12 Opioids and driving 13 Non-pharmacological approaches to pain 13 Adjuvant treatments for specific pains 14 Pains amenable to nerve blocks 16 Syringe drivers 28 Gastrointestinal symptoms 17 Nausea and vomiting 17 Antiemetic drug profiles 19 Intestinal obstruction 20 Mouth problems 22 Anorexia and anorexia/cachexia syndrome 24 Constipation 25 Diarrhoea 26 Fistulae 26 Ascites 27 Syringe drivers 28 Respiratory symptoms 30 Breathlessness 30 Cough 33 Hiccup 34 Respiratory tract secretions 57 Neurological problems 35 Raised intracranial pressure 35 Fits 36 1 Spinal cord compression 37 Depression 38 Anxiety 39 Insomnia 40 Drowsiness 41 Confusion 42 Restlessness 44 Skin problems 45 Itch 45 Sweating 46 Pressure area care 47 Fungating wounds 49 Lymphoedema 50 Miscellaneous problems 51 Weakness/fatigue 51 Anaemia 52 Bleeding/haemorrhage 53 Venous thromboembolism 54 Hypercalcaemia 55 Use of steroids 56 The last few days of life 57 Psychological, spiritual and social care 59 Breaking bad news 60 Dealing with denial and collusion 62 Spiritual care 64 Culture 66 Bereavement 67 Bereavement 67 Unresolved/abnormal grief 69 Formulary 70 Acknowledgements 76 2 * indicates that this is best managed by specialists 3 INTRODUCTION Palliative care: • is the active total care of patients and their families, usually when their disease is no longer responsive to potentially curative treatment, although it may be applicable earlier in the illness; • provides relief from pain and other symptoms; • aims to achieve the best possible quality of life for patients and families; • responds to physical, psychological, social and spiritual needs; • extends as necessary to support in bereavement. This handbook contains guidance to help GPs, community nurses and hospital staff as well as specialist palliative care teams. It aims to provide a checklist for the management of common problems in palliative care, with some information on drug treatment. It is not a comprehensive textbook. Further advice can be sought from the specialist staff identified on the back cover or from any hospice or specialist palliative care unit. More detailed drug information may be found in the British National Formulary (BNF), or from the Palliative Care Formulary (PCF), see below. National Service Frameworks for heart failure, renal failure and other conditions are increasingly emphasising the importance of providing good palliative care to these patient groups as well as to those with cancer. The material in this Handbook is intended to apply across a range of diagnoses. Cautionary note: some of the drug usage recommended is outside product licence, whether by way of indication, dose, or route of administration. However, the approaches described are recognised as reasonable practice within palliative medicine in the UK. The rINN names for drugs are used throughout. Abbreviations Routes: csci = continuous subcutaneous infusion (by a syringe driver). sl = sublingual. sc = subcutaneous injection. po = by mouth. Timings: om, nocte = each morning, each night. od, bd = once, twice daily. tds, qds = three, four times times daily. q4h, q6h = every four, six hours. Further reading • The Oxford Textbook of Palliative Medicine (3rd edition, eds Doyle D, Hanks GW, Cherny N, Calman K) considers all aspects of palliative care in greater detail, and gives an entry into the literature. • The Palliative Care Formulary (eds Twycross R, Wilcock A, Charlesworth S, Dickman A), available online at www.palliativedrugs.com, gives more detailed advice on the drugs used in palliative care. 4 * indicates that this is best managed by specialists GENERAL PRINCIPLES OF SYMPTOM MANAGEMENT • Accurate and full assessment is essential for both diagnosis and treatment. • Be aware of the importance of non-physical factors in symptomatology - emotional, psychological, social and spiritual problems are often mixed together with physical symptoms. • When symptoms are difficult to control there may be more than one cause, or there may be hidden emotional, psychological, social and spiritual factors. • Use appropriate therapies to maintain the best possible quality of life and independence, and to allow patient and carers to focus on other important issues. • Be careful that drug side effects do not become worse than the original problem. • Sensitive explanation and inclusion of patient and carers in decision making are essential parts of symptom management. • A multiprofessional approach is essential, and may be facilitated by the use of a drug card and/or a shared information card. • Consider referral for a specialist palliative care opinion: - if there is a problem which does not respond as expected; - in complex situations which may benefit from specialist expertise; - for support for the hospital or primary health care team. • Continually reassess. GUIDANCE FROM NICE ON SPECIALIST PALLIATIVE CARE The National Institute for Clinical Excellence (NICE) has made the following statements in its Supportive and Palliative Care Guidance. The full Guidance can be seen at www.nice.org.uk. A significant proportion of people with advanced disease experience a range of complex problems that cannot always be dealt with effectively by generalist services. Hospices and specialist palliative care services have been established across the country over the past four decades to help minimise these problems. Areas of expertise within specialist palliative care to which patients and carers may need access include: • unresolved symptoms and complex psychosocial issues for patients with advanced disease; • complex end of life issues; • complex bereavement issues. Specialist palliative care should be available to those with any diagnosis, not only those with cancer. Services should as a minimum include specialist palliative care inpatient facilities and hospital and community teams. Advice should be available on a twenty-four hour, seven days a week basis. * indicates that this is best managed by specialists 5 PAIN Diagnosis Accurate diagnosis of the cause(s) of pain is necessary for a rational approach to therapy. There are many components to pain and all relevant physical, psycho-social and spiritual factors need to be taken into account. It must not be assumed that pain has been caused by the primary diagnosis: debility, previous treatment and unrelated causes must also be considered. The analgesic ladder approach (see over) is the basis for prescribing in all types of pain, but careful choice of appropriate adjuvant drugs will increase the chance of effective palliation. Causes / Risk Factors 1 Physical Nociceptive pain caused by somatic, visceral or bone injury. Neuropathic pain caused by nerve injury. 2 Non-physical Anger, anxieties, fears, sadness, helplessness. Spiritual, social and family distress. Assessment Obtain the patient’s own description and assessment of their pain(s): 1 What is the pain like? • site and radiation - a body diagram is helpful; • character - list the patient’s descriptors; • intensity - use a severity or rating scale; • exacerbating and relieving factors; • effect on function and sleep. 2 What is causing the pain? • the disease, by direct invasion, pressure, etc; • the treatment, eg constipation, mucositis; • debility, eg pressure sores, muscle stiffness; • unrelated pathologies, eg vascular disease. 3 Is it a specific type of pain? • bone - worse on movement, weight bearing; • nerve - burning or shooting, radiates; • liver - hepatomegaly, RUQ tenderness; • raised ICP - headache worse lying down; • colic - intermittent, cramping. 4 Other factors • psychological, social and spiritual distress. All pains have a significant psychological component, and fear, anxiety and depression will all lower the pain threshold. Remember also the likely effects of life changes associated with terminal disease including loss of financial security, loss of body image and compromised sexual function. Together with more existential and religious uncertainties, these factors can have a major impact on the way a person perceives and copes with pain. 6 * indicates that this is best managed by specialists Management The World Health Organisation (WHO) ‘analgesic ladder’ emphasises that: • analgesics should be given regularly; • it is essential to use an analgesic appropriate to the severity of the pain; • a patient whose pain does not respond to weak opioids needs management with strong opioids; • all patients taking opioids should also be prescribed laxatives; • the oral route is preferred for all steps of the ladder; • additional methods of pain control must be considered in all patients. Step 1 Non opioids Paracetamol: oral or rectal (500mg-1g qds, maximum 4g per day). NSAIDs: useful for any pain aggravated by movement; risk/benefit balance must always be considered; renal impairment is common with NSAIDs; relatively contra-indicated in heart failure; gastric protection with misoprostol or PPIs is advisable; choice of NSAID is largely dictated by local preference: • ibuprofen (200-400mg tds or qds, maximum 2.4g per day); • diclofenac (tabs SR 75mg bd, supps 100-150mg daily); • naproxen (tabs 500mg bd). Step 2 Weak opioids Codeine 30mg with paracetamol 500mg (co-codamol 30/500), 1-2 qds. Tramadol 50-100mg qds or tramadol MR 100-200mg bd. Other weak opioids include dihydrocodeine, but this offers no advantages. Step 3 Strong opioids (see following pages). Step 1 Mild pain Non-opioid Step 2 Moderate pain Weak opioid +/- non opioid Step 3 Severe pain Strong opioid +/- non opioid Co-analgesia Adjuvant drugs - see pp 14-15 Nerve blocks, TENS, relaxation, acupunture Specific therapies Radiotherapy, chemotherapy, surgery Address psychological problems * indicates that this is best managed by specialists 7 USE OF STRONG OPIOIDS Morphine remains the first-line opioid of choice. 1 To gain control of the pain: A If using normal release morphine (elixir or tablets), give it every 4 hours, usually 2.5-10mg, with prn doses equal to the 4-hourly dose. The eventual effective dose may range from 2.5mg to more than 200mg but only a minority will need more than 30mg 4-hourly. B If using modified release morphine, give 10-30mg q12h, with prn doses of immediate release morphine one third as large as the 12-hourly dose. Note that pain control may take longer to achieve. 2 Titrate the dose to achieve pain relief, increasing the dose by 30-50% every 2-3 days, or sooner if needed. A typical dose sequence is: 5 - 10 - 15 - 20 - 30 - 40 - 60 - 90 - 120 - 150 - 200mg. 3 Reassess pain control daily: • a treatment log kept of analgesic doses and degree of pain is helpful; • there is no ‘maximum’ dose if the pain is morphine responsive. 4 Once pain is controlled, consider changing a 4-hourly regime to modified release morphine: the 12-hourly dose will be three times the 4-hourly dose. As an example, normal release morphine in a dose of 10mg q4h is equivalent to modified release morphine 30mg q12h. In either case, the prn dose for breakthrough pain will be the same as the 4-hourly dose, in this example 10mg (see p10). 5 With either method of initial titration: • elderly patients and those with renal or hepatic impairment (see p12) are likely to need lower or less frequent doses; • review doses regularly: if using two or more breakthrough doses, increase the regular dose as suggested below; • increase dose by 30-50% increments each day until pain controlled or side effects prevent further increase. Doses can be rounded up or down according to individual need and to reduce number of tablets; • avoid unwieldy doses such as 22.75mg which lead to confusion and error. 6 Wait for 30 minutes after breakthrough medication to assess response; if pain continues, the patient requires a full reassessment. 7 Use continuing pain as an indication to increase the dose but remember that not all pains are fully opioid responsive. Patients with persisting side-effects, eg drowsiness, vomiting, confusion, should be reviewed. If both pain and side- effects are present, consider other approaches. 8 To avoid confusion between preparations with names that seem similar to patients, and to ensure consistent bioavailability, we recommend that both immediate release and slow release preparations, as well as transdermal anlgesics, are prescribed by their trade name. 8 * indicates that this is best managed by specialists Instructions to the patient and carer 1 Emphasise the need for regular administration. 2 Explain about breakthrough medication. 3 Warn about possible side effects. 4 Reassure that when used for pain relief, morphine is not addictive and that its use does not prejudice future pain relief. Unwanted effects of strong opioids 1 Constipation is virtually inevitable - use prophylactic laxatives (see p25). 2 Nausea is fairly common in opioid naïve patients, particularly at higher doses. Sometimes clears after one week but may then recur if dose increased. May need antiemetic, eg haloperidol 1.5mg nocte, cyclizine 50mg tds. 3 Drowsiness normally clears within 7 days; if persistent reduce dose, and/or consider other options. Respiratory depression is not seen unless very drowsy. 4 Hallucinations may occur, particularly if the dose is too high. 5 Other troublesome symptoms include dry mouth, itching, sweating. 6 Signs of excess opioid (seek advice): • increasing drowsiness; • vivid dreams/hallucinations; • muscle twitching/myoclonus/jerking;* • hyperalgesia on light touch.* These problems may occur with any opioid but are seen especially with morphine when there is moderate to severe renal impairment, dehydration or infection. The myoclonus and hyperalgesia are not reversed by naloxone. Changing from one opioid to another When oral administration is not possible because of dysphagia, vomiting or weakness, consider changing to a transdermal formulation (see p11) or to a subcutaneous infusion using a syringe driver (see pp10, 28). The dose conversion from oral morphine to subcutaneous morphine (total daily dose) is normally taken as 2:1, while that from oral morphine to subcutaneous diamorphine varies between 3:1 and 2:1 allowing some flexibility depending on the requirement for increased or decreased opioid effect. If there is difficulty achieving good pain control without unacceptable side effects, changing the strong opioid may be helpful. However, most problems can be solved by improving the titration, or using adjuvant drugs. Seek specialist advice: • when converting from higher doses of one opioid to another as conversion ratios may be different at higher doses;* • when pain persists but there is opioid toxicity;* • when converting to or from methadone.* * indicates that this is best managed by specialists 9 Morphine preparations Immediate release oral morphine: • Oramorph liquid 10mg/5ml, 100mg/5ml. • Sevredol tablets 10mg, 20mg, 50mg. • Oramorph unit dose vials 10mg/5ml, 30mg/5ml, 100mg/5ml. Modified release oral morphine: • Zomorph capsules† 10mg, 30mg, 60mg, 100mg, 200mg (q12h). • MST Continus tablets 5mg, 10mg, 15mg, 30mg, 60mg, 100mg, 200mg (q12h). • MST Continus suspension 20mg, 30mg, 60mg, 100mg, 200mg (q12h). Contents of sachets to be mixed with water. Expensive. • Morphgesic SR tablets 10mg, 30mg, 60mg, 100mg (q12h). • MXL capsules† 30mg, 60mg, 90mg, 120mg, 150mg, 200mg (q24h). • Morcap SR capsules† 20mg, 50mg, 100mg (q12h probably better than q24h). † indicates that capsule can be opened and contents sprinkled on food or drink Morphine sulphate injection 10mg, 15mg, 20mg, 30mg per 1ml ampoule. Morphine suppositories 10mg, 15mg, 20mg, 30mg. Other oral and injectable strong opioids See overleaf for a Table of equivalent potencies. Diamorphine has been the strong opioid of choice for parenteral use because of its greater solubility than morphine. However, there have recently been supply problems. Maximum recommended concentration is 250mg/ml. Subcutaneous diamorphine is 2 to 3 times more potent than oral morphine (see p10). In addition there is some anecdotal evidence that diamorphine may be more effective than morphine in neuropathic pains, even when given by mouth. a) Tablets 10mg (immediate release, q4h). b) Ampoules 5mg, 10mg, 30mg, 100mg, 500mg. Dissolve in water for injection. Oxycodone is available for oral and injectable use, and may be useful in those who cannot tolerate morphine, although the side effect profile is similar. a) OxyNorm liquid, 5mg/5ml, 50mg/5ml (immediate release, q4h). b) OxyNorm capsules, 5mg, 10mg, 20mg (immediate release, q4h). c) OxyContin tablets, 5mg, 10mg, 20mg, 40mg, 80mg (modified release, q12h). d) OxyNorm injection, 10mg/ml. Methadone Methadone* may be useful in patients with pain poorly responsive to morphine * or who have intolerable side effects. However, it has a variable metabolism and dangerous accumulation can occur. Steady state potency of oral methadone to morphine ranges from 3:1 to 10:1. Classically, dose titration is achieved using a prn regime over a period of 5-7 days before switching to a 12-hourly regime. It can be useful in both nociceptive and neuropathic pain where there is unacceptable opioid toxicity or too rapid dose escalation, and in difficult pain syndromes. Its use is best restricted to those with extensive experience. 10 * indicates that this is best managed by specialists Hydromorphone Hydromorphone* is structurally similar to morphine: its place is uncertain. * a) Palladone capsules† 1.3mg, 2.6mg (4-hourly); b) Palladone SR capsules† 2mg, 4mg, 8mg, 16mg, 24mg (12-hourly). Hydromorphone injection is available on special order. It is highly soluble and is useful when diamorphine cannot be given. c) Hydromorphone injection 10mg/ml, 20mg/ml, 50mg/ml. † indicates that capsule can be opened and contents sprinkled on food or drink Alfentanil Alfentanil* has a rapid onset but short duration of action. It may be useful for * treatment of procedure pain such as dressing changes either by subcutaneous injection or as a buccal spray. It can be given by syringe driver particularly in patients with renal failure who exhibit neuro-excitability reactions with other opioids. It is approximately 10 times more potent than injected diamorphine. Use diamorphine prn for breakthrough pain, in a dose that is twice the 24-hourly dose of alfentanil. a) Rapifen injection 500mcg/ml, 2ml amp; Rapifen 5mg/ml, 1ml amp. Oral transmucosal fentanyl citrate (OTFC) lozenges (Actiq) are difficult to titrate and are expensive. Other approaches are usually available. We do not recommend pethidine for regular use in chronic cancer pain. For conversion from pethidine to morphine seek specialist advice.* Relative potencies of various opioid analgesics by different routes This table provides only an approximate guide to opioid equivalents, because comprehensive data are lacking. Doses always need to be re-titrated after a change of opioid. Breakthrough dose is normally 1/6th the total dose over 24 hrs. Drug and route of administration Dose ratio Total dose, mg/24 hrs Oral codeine 12 360 - - Oral tramadol 5 150 400 - Oral morphine 1 30 90 240 Subcutaneous morphine 1/2 15 45 120 Subcutaneous diamorphine 1/3 10 30 80 Oral oxycodone 1/2 15 45 120 Subcutaneous oxycodone 1/3 10 30 80 Oral hydromorphone 1/8 4 12 32 Subcutaneous hydromorphone 1/16 2 6 16 Subcutaneous alfentanil 1/30 1 3 8 * indicates that this is best managed by specialists 11 Strong opioids available for transdermal use These can be useful especially when there is vomiting, difficulty swallowing, or intractable constipation despite laxatives. However, they are expensive and will only be of benefit in opioid responsive pain. Note that: • dose titration is difficult unless dose requirements are known; • there is a possibility of withdrawal symptoms when converting from morphine, which respond to small doses of immediate release oral morphine; • they are unsuitable for initial titration or acute pain, because it takes 18-36 hours for plasma levels to reach steady state after applying a patch and 18 hours for them to fall by 50% after removal; • breakthrough analgesia must be provided; • constipation, nausea and sedation are less than with morphine. Practicalities: • patients converting from 4-hourly normal release morphine must continue regular morphine for the first 12-24hr; • patients converting from 12-hourly modified release morphine should apply the first patch at the same time as taking the final 12-hourly dose; • normal release opioid should always be prescribed for breakthrough pain; • the dose of the patch should not be changed within the first 2 days of application or of any change in dose; • laxatives should be reduced by up to 50% and then titrated to need; • patients should be warned that they may experience more breakthrough pain in the first 1-3 days; • see p52 for advice on the use of transdermal fentanyl at the end of life. Fentanyl a) Durogesic DTrans 12mcg/hr, 25mcg/hr, 50mcg/hr, 75mcg/hr, 100mcg/hr (every 72 hours). Fentanyl may be given by csci via a syringe driver, and is equipotent with the transdermal route (eg 50mcg/hr patch equivalent to 1.2mg/24hr by csci). Buprenorphine is now available in transdermal patch formulations. Experience is limited and the manufacturer’s product guide should be used to inform prescribing. The partial agonist effect of this drug is not seen at conventional doses, and morphine may be used for breakthrough analgesia. a) Transtec patch 35mcg/hr, 52.5mcg/hr, 70mcg/hr (every 72 hours); b) BuTrans patch 5mcg/hr, 10mcg/hr, 20mcg/hr (every 7 days). Buprenorphine is also available as a sub lingual tablet and injection. Oral morphine (total mg/24 hrs) 30 60 90 180 240 Oral morphine for breakthrough (mg) 5 10 15 30 40 Transdermal fentanyl (microgram/hr) - 25 37 50 75 Transdermal buprenorphine (microgram/hr) 35 35 52.5 105 140 12 * indicates that this is best managed by specialists OPIOIDS AND RENAL OR HEPATIC IMPAIRMENT A number of metabolites of morphine accumulate in renal impairment, leading to sedation and neuromuscular excitation, manifested as: • increasing drowsiness; • vivid dreams/hallucinations; • muscle twitching/myoclonus/jerking;* • hyperalgesia on light touch or on being turned.* This is an important cause of ‘terminal agitation’. It is not reversed by naloxone. In patients with loss of muscle bulk, serum creatinine measurement may significantly underestimate the degree of renal impairment. Any degree of myoclonus in the presence of a plasma urea > 15mmol/l should raise suspicion of morphine metabolite toxicity. It may respond to a reduction in the dose and/or frequency of administration, but it is often better to switch to an opioid which does not accumulate in renal impairment such as fentanyl, buprenorphine or alfentanil (not dialysed). Opioid toxicity may also occur in hepatic impairment, but clinical difficulties do not usually arise unless the impairment is severe: prothrombin time (or INR) is a more sensitive indicator of severe impairment than standard liver function tests. All opioids can precipitate confusion and encephalopathy, but oral opioids will be particularly affected because of the loss of first pass metabolism. Careful re-titration is necessary using both a reduction in the dose and a lengthening of dose interval, while considering an alternative opioid. In the dying patient, maintenance of good analgesia remains the highest priority. Opioid Renal impairment Hepatic impairment Moderate Severe Severe# Moderate Severe Severe# morphine Reduce dose Avoid Normal dose Reduce dose diamorphine Reduce dose Avoid Normal dose Reduce dose fentanyl Normal dose Normal dose Normal dose Reduce dose hydromorphone Reduce dose Reduce dose Normal dose Reduce dose oxycodone Reduce dose Avoid Normal dose Reduce dose methadone Normal dose Normal dose Normal dose Reduce dose alfentanil Normal dose Normal dose Normal dose Reduce dose buprenorphine Normal dose Normal dose Normal dose Reduce dose # Always seek specialist advice in cases of severe renal or hepatic impairment. * indicates that this is best managed by specialists 13 OPIOIDS AND DRIVING Doctors have a legal responsibility to advise patients if a disability is likely to make them a danger when driving. Taking morphine for medicinal reasons does not automatically disqualify from driving, but the following advice should be given. • Do not drive for at least two days, and preferably five, after starting morphine or after an increase in dose. • Inform the insurance company. If this is not done and there is an accident, the patient may find they are not covered, irrespective of fault. • Remember that it is not only the reaction time that is important. Weakness will significantly increase the time taken to move from accelerator to brake. • Check fitness to drive by taking a trusted companion as a passenger and driving for 10-15 minutes on quiet roads. If both parties are happy, it is reasonable to drive for short distances. • Driving while under the influence of a drug is an offence under Section 4 of the Road Traffic Act 1988, and conviction carries an automatic penalty of disqualification from driving. NON-PHARMACOLOGICAL APPROACHES TO PAIN A Emotional and spiritual support 1 Always make a careful assessment of the pain: • assess each pain and identify the likely cause; • consider the impact of the pain on the patient and family; • make a diagnosis and explain this to the patient and family; • agree a pain management plan; • ensure that both patient and carer understand the use of their medication. 2 Consider what this pain means for this person, within their previous experience of illness in themselves and others. B Help to develop coping strategies There is an extensive literature on developing coping strategies in chronic pain which may be useful within the palliative care setting when pain is intractable. They are based on acceptance of the pain and the maintenance of normal activity. Many chronic pain clinics have clinical psychologists who specialise in this field. C Relaxation techniques and creative therapies These may be available through a number of staff working in the professions allied to medicine, for example physiotherapists and occupational therapists, and also through complementary therapists. D Acupuncture or transcutaneous electrical nerve stimulator (TENS). 14 * indicates that this is best managed by specialists ADJUVANT TREATMENTS FOR SPECIFIC PAINS A Bone pain 1 Consider early referral for palliative radiotherapy - usually a single fraction is effective. Patients with multiple sclerotic metastases may benefit from radioactive isotope treatment. 2 NSAIDs may be effective but beware side effects: discontinue if not helping. Gastro-protective agents (proton pump inhibitor or misoprostol) should be prescribed to patients also taking corticosteroids and those with a history of GI side-effects or who are at extra risk of peptic ulceration for another reason. 3 IV infusions of bisphosphonates* may reduce pain in patients with bone metastases, especially from breast and prostate cancer and myeloma: pamidronate 60-90mg or zoledronic acid 4mg every 3-4 weeks, depending on identified response. 4 Consider referral for orthopaedic surgery and internal fixation for lytic metastases at risk of fracture. 5 When pain in a long bone is severe and of sudden onset, consider the possibility of a pathological fracture: obtain Xray and consider orthopaedic opinion. B Abdominal pain 1 Constipation is a common cause; avoid assuming pain must be due to cancer. 2 For colic use an anticholinergic such as oral propantheline or subcutaneous hyoscine butylbromide 20-120mg/24hrs usually by syringe driver. Note that hyoscine butylbromide is poorly absorbed when taken orally. 3 For liver capsule pain consider dexamethasone 4-8mg/day in combination with opioids, with or without NSAID. 4 For pain arising from an upper abdominal tumour consider coeliac plexus block (see p16). 5 Remember that NSAIDs are a common cause of iatrogenic abdominal pain. C Rectal pain 1 Exclude constipation by abdominal and rectal examination. 2 Tenesmus and deep seated pelvic pains may respond to amitriptyline or dosulepin. 3 Local or systemic steroids. 4 Drugs for relief of muscle spasm: • nifedipine immediate release capsules 10-20mg orally or sl after opening. • glyceryl trinitrate ointment 0.1-0.2% bd. • benzodiazepines, eg diazepam 2-10mg nocte. 5 Local radiotherapy may be beneficial especially if steroid treatment is successful. 6 Consider nerve blocks (see p16). * indicates that this is best managed by specialists 15 D Neuropathic pain Often aching in nature, sometimes burning or shooting, and may be worse after movement or at night. May not respond in a predictable way to pain-relieving medication. May presage cord compression, especially at the level of the thoracic spine. Specialist palliative care team or chronic pain team will be happy to advise and referral is suggested at an early stage. Note that drowsiness may be a dose limiting side effect for all tricyclic antidepressants and for antiepileptics. 1 Titrate to maximum tolerated dose of opioid. 2 Amitriptyline 10-25mg or dosulepin 25mg nocte initially; increase dose to maximum tolerated (normally 75mg) and stop if no benefit after 7 days at that dose. SSRIs do not appear to be of benefit. 3 According to response either add or substitute antiepileptic; discontinue if no benefit after 5 days on highest dose tolerated: • gabapentin starting at 300mg/day (100mg/day in elderly) and increasing by that amount every 1-3 days to a maximum 3600mg/day; give in divided doses; reduce dose in renal impairment; • carbamazepine 200-1200mg/day (benefit often limited by side effects); • clonazepam starting at 500mcg nocte; • sodium valproate 400-800mg/day; • pregabalin may have a role but experience is limited; no confirmed benefit over gabapentin. 4 Dexamethasone 4-8mg daily - stop if no improvement after 5 days. 5 Other approaches that may be considered include: TENS, acupuncture, neural blockade and other pharmacological approaches including clonidine*, ketamine*, methadone*, midazolam*. Specialist advice recommended. E Muscle pain 1 Muscle relaxants: diazepam, baclofen, clonazepam, dantrolene, tizanidine. 2 Physiotherapy, aromatherapy, relaxation, heat pad. F Bladder spasm 1 Oxybutynin 2.5-5mg bd-qds, tolterodine 2mg bd. 2 Amitriptyline 10-75mg nocte. 3 NSAIDs. 4 If catheterized, intravesical bupivacaine 0.25%, 20mls for 15 mins tds. G Acute pain of short duration For example pain on moving a fractured limb or changing a painful dressing. 1 Immediate release oral morphine: give 1/6th total daily oral morphine dose. 2 Nitrous oxide (as Entonox). 3 Oral transmucosal fentanyl citrate* (expensive; dose difficult to predict). 4 Alfentanil* by sc injection or buccal spray (special order from Torbay Hospital Pharmacy), 0.25-0.5mg if opioid naïve. 16 * indicates that this is best managed by specialists PAINS AMENABLE TO NERVE BLOCKS Many pains are amenable to intervention by a pain management specialist anaesthetist. Neural blockade can be temporary with local anaesthetic or semi-permanent with neurolytic agents such as phenol. By reducing local inflammation, injected steroids are particularly useful when pain is due to compression of the nerve. 1 Intrathecal or epidural opioid and local anaesthetic infusions may help in difficult pains. 2 Back pain due to metastases often responds to epidural injection of high dose steroid and local anaesthetic. Caudal injections are easily performed and are useful for sacral pain. Thoracic and cervical epidurals are much more difficult. 3 Chest wall pain can be very difficult to control, especially when it occurs as a result of mesothelioma. Intercostal and paravertebral blocks are easy to perform, and success is claimed for cervical cordotomy or thoracic epidurals in very specialized hands. 4 Upper abdominal pain, especially due to pancreatic tumour, responds to coeliac plexus block in around 80%. This can be performed easily and under direct vision at laparotomy, or at any time under CT control. 5 Lower abdominal and pelvic pain - lumbar plexus block can give worthwhile benefit but with a lower success rate. 6 Hip pain may be helped by a variety of different procedures, including direct injection of local anaesthetic and steroid into the joint, psoas compartment block, and block of the obturator nerve together with the nerve to quadratus femoris. 7 Perineal pain - saddle anaesthesia using intrathecal phenol. Like all neurolytic techniques this is the province of the specialist. 8 Rib pain may be temporarily abolished by intercostal injection of local anaesthetic proximal to the lesion. Longer term benefit may result from infiltration with depot steroid. Care is needed but the technique is well within the capability of a trained non-specialist. If helpful, permanent block may be obtained with cryoprobe. 9 Pancoast tumour or other brachial plexopathy - brachial plexus block. * indicates that this is best managed by specialists 17 NAUSEA AND VOMITING Mechanisms Raised intra-cranial pressure Pain, unpleasant sights, smell, anxiety, fear Cerebral cortex Motion; position Vestibular nuclei (H H1 & ACh AChM) Vomiting centre (ACh AChM, 5HT , 5HT2, H , H1) NK1 Endogenous toxins or drugs- opioids, cytotoxics. Hypercalcaemia, uraemia, ketones, carcinomatosis, radiotherapy Chemoreceptor trigger zone (D D2 & 5HT 5HT3) Stimuli from pharynx, stomach & viscera - cough, pharyngeal stimulation, bronchial secretions, gastric stasis/distention, enlarged liver, constipation, intestinal obstruction Release of emetogenic agents Vagal & sympathetic afferents (5HT 5HT3, 5HT , 5HT4) Blood CSF 18 * indicates that this is best managed by specialists Causes / Risk factors There are many causes of nausea and vomiting and more than one cause may be identified in any particular patient. Mechanisms are outlined on the previous page. See next page for profiles of antiemetics. Use appropriate non-drug measures such as ginger, psychotherapeutic techniques, acupuncture and Seabands, and treat the cause if possible. If drug-induced, consider stopping the drug, reducing the dose, or changing the route or formulation. As with analgesia for pain control, antiemetics need to be given regularly for effective control of nausea and vomiting. Use the oral route for prophylaxis of nausea, but in established emesis use other routes (principally sc) for initial control. Cause Therapy Raised intracranial pressure Dexamethasone (see p35) Cyclizine Anxiety See section on anxiety, p39 Motion, positional Cyclizine Hyoscine hydrobromide patch Drugs, endogenous toxins Haloperidol Prochlorperazine Levomepromazine Metoclopramide Chemotherapy Consult oncology colleagues Early: 5HT 5HT3 antagonists or prokinetics Delayed: dexamethasone, levomepromazine Gastric stasis Domperidone Metoclopramide Erythromycin Gastric irritation Review medication Antacids Proton pump inhibitors Misoprostol 400mcg bd if caused by NSAIDs Indeterminate Cyclizine Haloperidol Levomepromazine Dexamethasone 4-8mg om Intestinal stasis Metoclopramide 40-60mg daily Constipation See separate section p25 Intestinal obstruction See separate section p20 * indicates that this is best managed by specialists 19 Drug profiles Cyclizine • H1 antihistamine with anticholinergic action • 50mg tds orally or by im or sc injection (painful) • 100-150mg daily by csci (skin irritation) Domperidone • dopamine D D2 antagonist and prokinetic • unlikely to cause sedation / extrapyramidal effects • 10-20mg tds orally • 30-60mg suppositories tds rectally Haloperidol • pure dopamine D D2 antagonist • drug of choice for opioid induced vomiting • 1.5-5mg nocte, oral or sc • 2.5-5mg over daily by csci • may cause extrapyramidal effects Hyoscine hydrobromide • antimuscarinic anticholinergic (AChM) • 0.3-0.6mg up to qds sl (Kwells) or sc • 0.8-2.4mg daily by csci (sedating) • 1mg every 72hr by transdermal patch Levomepromazine • activity at multiple sites (5HT 5HT2, ACh , AChM, D , D2, H1) • antiemetic at modest doses (5-25mg daily) • use lowest effective dose unless sedation required • usually given as single oral dose at night or by csci • can cause hypotension in susceptible patients Metoclopramide • dopamine D D2 antagonist and prokinetic • 5HT 5HT4 agonist (intestinal prokinetic) • 5HT 5HT3 antagonist at high doses ( > 100mg daily) • 10-20mg tds orally or im; may be given as csci Prochlorperazine • predominantly D D2 antagonist, weak anti- ACh AChM/H /H1 • 5-10mg tds orally or 3-6mg bd as buccal tablets • 12.5mg tds by deep im injection - do not give sc 5HT3 antagonists • ondansetron and others (see BNF Section 4.6) • used to control early emesis after chemotherapy • some are also licensed for postoperative emesis • cause constipation • avoid prolonged use Corticosteroids • unknown mode of action • may help emesis of indeterminate cause • use dexamethasone 4-8mg od for 5 day trial Neurokinin 1 antagonists • used as an adjunct in emetogenic chemotherapy 20 * indicates that this is best managed by specialists INTESTINAL OBSTRUCTION Intestinal obstruction in association with advanced cancer is often complex and difficult to control. Early discussion with specialist palliative care team is recommended. Has both mechanical (intestinal narrowing) and functional (poor motility) elements. Diagnosis 1 Range of symptoms depends on level of blockage, but these include: • vomiting often with little preceding nausea; • constipation, although some flatus and/or stool may still be passed; • abdominal distension and generalised discomfort; • colic may or may not be a feature; • bowel sounds may be hyperactive or scanty. 2 Examine previous operation notes; abdominal x-ray may be helpful. 3 Exclude simple constipation by rectal and abdominal examination. Causes / Risk factors • Most common with primary tumours of ovary and colon. • May occur with almost any primary site, including breast and lung. • Tumour mass within lumen. • Tumour on peritoneal surface causing compression or adhesions. • Infiltration within muscle coats preventing normal peristalsis. • Damage to autonomic nerve plexuses by tumour infiltration of mesentery. • Pancreatic carcinoma may cause gastric stasis by unknown mechanism. • Adhesions, radiation fibrosis, metabolic disturbance, constipation, sepsis. Management This will depend on the site of obstruction; whether complete or incomplete; bowel motility; and the patient’s wishes and general condition. 1 Consider surgery or stenting if there are clinical features to suggest a single site of obstruction, especially where colic is a prominent symptom, or where distension is such as to require venting. 2 If inoperable, aim to control symptoms without the need for continuous ‘drip and suck’ but: a) nasogastric intubation or percutaneous venting gastrostomy may be preferred by patients with gastroduodenal obstruction where drug treatment has been unsuccessful; b) hydration with 1 litre per day iv or sc may aid patient comfort. 3 Treat dry mouth (see p23). 4 Treat symptomatic gastro-oesophageal reflux. * indicates that this is best managed by specialists 21 5 Drug therapy Constant abdominal pain • Strong opioids, eg diamorphine by csci. Colic • Avoid/stop stimulant and bulking laxatives. • Avoid prokinetic antiemetics (metoclopramide, domperidone). • Hyoscine hydrobromide 300mcg qds sl (Kwells). • Hyoscine butylbromide 40-120mg daily by csci. • Loperamide may help, if able to take medication orally. Nausea and vomiting Aim to abolish nausea and to reduce vomiting to a minimum. • Cyclizine 50mg tds po or by injection, or 150mg daily by csci. • Levomepromazine - see p19. • Haloperidol - see p19. • Metoclopramide may help where there is gastric stasis or ileus but is contra- indicated in the presence of colic; the response is unpredictable if there has been a gastro-jejunostomy. • Anti-secretory agents. a) If high (gastroduodenal) obstruction: • hyoscine butylbromide 40-120mg daily by csci reduces secretions; • H2 blockers (ranitidine, nizatidine) reduce volume of gastric secretions. b) If small bowel obstruction consider: • hyoscine butylbromide (see above); • octreotide* initially 300mcg daily by csci: reduces volume of intestinal secretions and inhibits motility. Effect may take several days to appear. The final effective dose is likely to be 200-800mcg per day. Laxatives • Check that lower rectum is empty. • Do not use if there is complete obstruction. • If there is partial intermittent obstruction, use pure faecal softeners to coax stool through narrowed loops of bowel: docusate sodium up to 200mg tds; magnesium hydroxide mixture 20-30 ml od or bd; macrogols (Movicol) 1 sachet up to tds. Shrinkage of tumour masses • Dexamethasone 4-8mg daily may help to relieve peri-tumour oedema and so relieve obstruction, particularly at the gastric outlet. • Hormone/cytotoxic therapy is occasionally indicated if the patient’s overall condition is good, especially in primary tumours of ovary, colon or breast. • Radiotherapy is occasionally appropriate for low large bowel tumours. 22 * indicates that this is best managed by specialists MOUTH PROBLEMS Good mouth care is essential to the well being of debilitated patients. Although mouth problems are very common (up to 90% of patients in some surveys), it is often a neglected area of care. Diagnosis 1 Assess oral cavity daily using a pen torch and spatula. Note the state of the lips, teeth/dentures (remove the dentures for examination), mucous membranes and tongue, and also the type/volume of saliva. 2 Assess nutritional status - quality of diet and adequacy of fluid intake. 3 Assess mental state - will determine the patient’s ability and willingness to participate in his or her care. Causes / Risk factors 1 Dry mouth (xerostomia) especially from drugs (opioids, tricyclic antidepressants, antimuscarinics), dehydration (reduced intake or diuretics) and local radiotherapy. 2 Poor oral and dental hygiene. 3 Poor oral intake leading to decreased mastication. 4 Poor nutritional state, especially if leading to vitamin deficiencies. 5 Infections: viral, bacterial and fungal. 6 Some cytotoxics can cause mucositis and acute ulceration; radiotherapy can cause mucositis. 7 Corticosteroids and diabetes predispose to oral candidosis. 8 Oral tumours. Management 1 Review medications causing dry mouth or other oral problems. 2 Treat oral infections. 3 Maintain frequent attention to good oral hygiene. 4 Provided mouth is clean, alcohol free chlorhexidine mouthwash may be used in debilitated patients - inhibits plaque formation and is antiseptic. Other mouth rinses are not recommended. 5 Maintain good denture care by cleaning and rinsing thoroughly. Dentures can be named by writing on them with a pencil and applying a coat of nail varnish. * indicates that this is best managed by specialists 23 Specific problems Lack of good quality saliva 1 Salivary stimulants • Sugar free chewing gum; • Pilocarpine tablets 5-10mg tds (or eye drops 4%, 1-2 drops, flavoured to taste); 2 Saliva substitutes • Saliva Orthana (spray thoroughly); • Other gels and lozenges: see BNF 12.3.5. 3 Sips of iced water or cold milk may give short term relief. Oral thrush 1 Increase the flow of saliva as described above. 2 Nystatin oral suspension: use an adequate dose to cover the mucous membranes-use 2-5ml at least qds for a 7-10 day course. Instruct patients to work well round the mouth and not to take food or drink immediately afterwards. 3 Fluconazole 50mg daily by mouth for 7 days. Less effective in xerostomia. Note that there is increasing resistance to triazole antifungals. 4 Ensure that dentures are cleaned and disinfected by using short soaks with sodium hypochlorite (Milton). 5 Swab confirmation of the organism and its sensitivities may be required if the infection is persistent. Painful mouth 1 Treat infections - herpes orogingivitis is common and extremely painful. 2 Use soluble aspirin or other NSAID mouthwashes for symptomatic relief. 3 Aphthous ulcers may respond to local steroid, eg hydrocortisone pellets or Adcortyl in Orabase - apply topically (without rubbing in). 4 Gelclair gel or Sucralfate suspension for chemotherapy induced ulcers. 5 Local anaesthetic (lidocaine) spray. 6 Morphine solution (preferably not Oramorph as it is in an alcohol base and stings) either locally or systemically for severe mucositis. Excessive salivation with drooling 1 May be helped by amitriptyline, hyoscine or glycopyrronium, but these may make the saliva unacceptably sticky, in which case propranolol should be considered. 2 Some units offer botulinum toxin injection to the salivary glands to reduce salivation. 3 In severe cases, radiotherapy to the salivary glands may be considered. 24 * indicates that this is best managed by specialists ANOREXIA Diagnosis 1 A reduced interest in food which at its most severe may manifest as nausea. 2 Often associated with taste changes. 3 May increase (appetite diminishes) as the day goes on. 4 Distinguish from mouth problems, difficulties with swallowing, and early satiety due to gastric stasis. Causes / Risk factors 1 Extensive malignancy (but occasionally occurs as a presenting symptom). 2 Uncontrolled symptoms. 3 Psychological, emotional and spiritual distress, especially depression. 4 Drugs, especially cytotoxics, digoxin. Management 1 Treat nausea, pain and other symptoms. 2 Reduce psychological distress with support and counselling. 3 Treat depression using mirtazapine - SSRIs can increase anorexia. 4 Review drugs. 5 Aim to provide frequent, small, attractive portions within pleasant and social surroundings. 6 Drug therapy - if drugs are needed and there are no contra-indications: • alcohol before meals; • megestrol acetate 160-320mg daily: may take 2-3 weeks to respond; • dexamethasone 2-4mg or prednisolone 10-30mg each morning. Steroids should always be used with caution; see separate section, p56. ANOREXIA/CACHEXIA SYNDROME Diagnosis 1 A syndrome of loss of appetite, fatigue, and profound weight and muscle loss. 2 There is usually an associated rise in acute-phase proteins, eg CRP. Causes / Risk factors 1 Usually associated with cancer but may occur with heart failure and chronic infection or inflammation. 2 Cytokine release leading to proteolysis, lipolysis, increased resting energy expenditure, and hypothalamic disturbances including anorexia. Management 1 Correct associated problems (see above). 2 Gentle but regular exercise programme to reduce muscle loss. 3 Dexamethasone 2-4mg om or NSAIDs to reduce inflammatory process. 4 Megestrol acetate 160-320mg od to improve appetite. 5 Evidence is unclear on the place of fish oils (eg Maxepa) and nutritional supplements (eg Prosure), or anabolic steroids. * indicates that this is best managed by specialists 25 CONSTIPATION Constipation is common in patients with advanced disease. It can cause abdominal pain and can lead to intestinal obstruction and urinary retention. Anorexic patients can become constipated due to accumulation of faecal matter formed from gut secretions, cells and bacteria. It is better to anticipate and prevent constipation than to wait until treatment is urgent. Diagnosis 1 Passing harder and/or less frequent stools than normal. 2 Faecal impaction may present with overflow (‘spurious diarrhoea’). 3 Rectal examination: empty or impacted, collapsed or cavernous? 4 Exclude intestinal obstruction. Causes/Risk factors 1 Drugs, especially opioids, tricyclic antidepressants, antispasmodics, ondansetron. 2 Inactivity, immobility, weakness, lack of privacy. 3 Dehydration due to poor fluid intake, vomiting, polyuria, fever. 4 Hypercalcaemia. 5 Concurrent disease including painful anal conditions, depression, diabetes. Management 1 Reduce or eradicate underlying cause(s) as far as possible. 2 If general condition allows, mobilise and encourage fluids. 3 Drug treatments: a) Use softeners if stool is hard, and stimulants if stool is not expelled. b) Patients taking regular opioids will usually and routinely need both. c) Macrogols are often sufficient on their own for those on opioids. Stimulants Senna 2-4 tablets nocte or bd. Bisacodyl tablets 5-20mg nocte or bd. Sodium picosulphate solution 5-10ml od/bd. Softeners Macrogols (Movicol) 1 sachet od or bd. Docusate sodium capsules 200mg nocte or bd. Combined preparations Codanthramer liquid or capsules (two strengths). Codanthrusate liquid or capsules. Osmotics Lactulose 10-15ml bd. Magnesium hydroxide 20-30ml od or bd. 4 One third of patients need suppositories or enemas for established constipation. If the rectum is loaded with hard stool use arachis oil retention enema overnight (enquire about peanut allergy) followed by Fletcher’s phosphate enema. 5 Manual evacuation should be a last resort and should be discussed amongst the multiprofessional team. Consent must be obtained after full explanation, and sedation may be required. Local anaesthetic gel should be used. Use with caution in the presence of inflammatory bowel disease, spinal cord compression or anticoagulant therapy. May induce bradycardia. 26 * indicates that this is best managed by specialists DIARRHOEA Diagnosis The patient who speaks of ‘diarrhoea’ may either be referring to the frequency of bowel motions, or to the fact that motions are loose. An accurate history and examination are crucial: assess for watery/liquid stools usually with an increased stool frequency. Causes / Risk Factors 1 Excess laxative use. 2 Impacted faeces with overflow (spurious diarrhoea). 3 Side effects of some drugs, eg chemotherapy, antibiotics. 4 Infections, including Clostridium difficile, Candida spp. 5 Partial intestinal obstruction. 6 Previous treatment: pelvic radiotherapy, extensive bowel resection. 7 On initiation of enteral feeding, especially by gastrostomy. 8 Pancreatic insufficiency, characterized by bulky, offensive stools which float. 9 Tumour effects, eg carcinoid, mucus secretion in rectal cancer. 10 Other conditions, eg inflammatory bowel disease, IBS, blind loop syndrome. Management 1 Review all drugs, including laxatives and non-prescription drugs. 2 Screen for infections and prescribe antibiotics as appropriate. 3 Address dehydration if appropriate. 4 Specific treatments Antibiotics for any infective cause. Steroids given locally or systemically for radiation induced diarrhoea. Pancreatic enzymes (Creon capsules; 3 strengths) for steatorrhoea. Octreotide* (see p21) for faecal fistulae, carcinoid syndrome. Metronidazole for bacterial overgrowth/blind loop syndrome. 5 Symptomatic treatments Loperamide 2-4mg every 6 hours; binds to opioid receptors in gut. Co-phenotrope (Lomotil) 2 tablets up to qds. Codeine phosphate 30-60mg tds-qds. FISTULAE Management 1 Assess fistula size, site and type, and patient’s overall condition. 2 Prevent excoriation with a barrier product. 3 Collect effluent in a closed stoma bag. A good seal is needed to minimise leakage and odour. If necessary seek advice from stoma care nurses. 4 Metronidazole may be helpful if there is blind loop or overgrowth of anaerobes. 5 Surgical intervention may be appropriate. 6 Octreotide* by csci may be helpful in reducing effluent, see p21. * indicates that this is best managed by specialists 27 ASCITES Diagnosis 1 Clinical assessment: progressive distension, shifting dullness, fluid thrill. 2 Abdominal ultrasound (with marking for paracentesis if appropriate). 3 Exclude tumour masses, organomegaly, distended bladder, intestinal obstruction. Causes / Risk factors 1 Peritoneal metastases - may be associated with extra-abdominal primary sites. 2 Hypoalbuminaemia, usually associated with extensive liver metastases. 3 Secondary sodium retention. 4 Venous compression or thrombosis of inferior vena cava or hepatic vein. 5 Tumour blocking diaphragmatic lymph ducts. 6 Other concurrent disease, eg heart failure, cirrhosis. Management 1 If symptoms are minor, explanation and reassurance may be sufficient. 2 Drug therapy Analgesia (from paracetamol up to strong opioids) for abdominal pain or discomfort of distension. Antiemetics: domperidone or metoclopramide for gastric stasis. Cytotoxic chemotherapy (local or systemic) may be appropriate, especially for primary carcinomas of ovary, breast or colon-seek oncological advice. Diuretics: furosemide (especially if dependent oedema) 40-80mg od; spironolactone (especially if low albumin) 100-200mg od. Diuretics are less likely to be effective if due to peritoneal metastases. Monitor electrolytes and renal function. Corticosteroids: dexamethasone 2-4mg om may reduce fluid production. Laxatives as appropriate to treat constipation. 3 Paracentesis may be appropriate for patients with a tense, uncomfortable, distended abdomen, especially if associated with breathlessness. Can be repeated. Unsuccessful if fluid is loculated (suspect if little fluid thrill; consider ultrasound scan). Drain up to 5 litres of fluid per day: sudden release of abdominal tension may lead to venous decompression, hypotension and collapse. Remove drain after 1-3 days: there is no advantage in draining to dryness. If leakage continues after drain is removed, place stoma bag over puncture site. 4 Peritoneo-venous shunt (eg Denver or LeVeen shunt) may be considered for selected patients who require frequent paracentesis as electrolytes and albumin are conserved. 28 * indicates that this is best managed by specialists SYRINGE DRIVERS A syringe driver is a small portable battery-powered pump which administers drugs subcutaneously by continuous infusion. It offers an alternative mode and route of drug administration with little impact on patient mobility or independence. By maintaining steady plasma levels a syringe driver may improve symptom control. Indications For administering medication when the oral route is difficult or inappropriate. If/when problems resolve, consider a return to oral medication. 1 Severe vomiting and/or nausea. 2 Dysphagia. 3 Severe oral tumours, sores, or infection. 4 Profoundly weak, unconscious, or sedated patient. 5 Poor absorption of orally administered medication. Practical points 1 The syringe driver should be set according to the rate of infusion required and type of syringe driver used. 2 The rate is set to millimetres of travel per unit time, not volume. There are two types of syringe driver in common use: the Graseby MS26, which is set in mm/day (eg 48mm/24hrs) and the Graseby MS16 which is set in mm/hr (eg 2mm/hr). The line should be primed before measuring length. 3 Use a Luerlock syringe in syringe drivers. A 20ml syringe allows greater dilution and less risk of precipitation. For the MS16 driver, the syringe should be filled to a length of 48mm. 4 Label the syringe with the patient’s name, drug(s) and dose(s), nature of diluent and the date and time commenced. 5 The syringe driver and insertion site must be checked at least once a day, and preferably every 4 hours in the hospital setting. 6 The boost button should not be used to administer breakthrough medication. 7 Use as few drugs in the syringe driver as possible (usually maximum of 3). 8 Site inflammation may occur as a result of irritant solutions or hypersensitivity to the cannula, especially if made of metal. Management strategies include changing the drug, changing the diluent, changing the site or changing the giving set from a metal butterfly to a plastic cannula. If problems persist, seek specialist advice. 9 Certain drug combinations may cause precipitation within the syringe. This may sometimes be overcome by the following strategies, but do not assume that lack of precipitation necessarily implies compatibility: • using a larger syringe to allow greater dilution; • using water rather than saline for dilution, or vice versa; • separating drugs into two syringe drivers; • drawing up dexamethasone last when used in combination; • substituting drugs with an equivalent alternative; • avoiding exposure to sunlight as non-observable reactions may occur. * indicates that this is best managed by specialists 29 Drugs used in the syringe driver • Water or normal saline may be used as diluents; some drugs specifically require one or the other: check local policy or Palliative Care Formulary (see p3). • Not all drug combinations are compatible: check with pharmacy or the Palliative Care Formulary. • Do not use diazepam, prochlorperazine or chlorpromazine, which are irritant. • All doses given are per 24 hours. Cyclizine 100-150mg Antihistamine and antimuscarinic antiemetic which acts at the vomiting centre. Often causes site irritation. Limited compatibility. Dexamethasone Up to 16mg Used to relieve raised intracranial pressure, liver capsule and neuropathic pain, and as antiemetic. May precipitate when mixed in syringe with other drugs. Diamorphine 5-300mg Preferred to morphine for sc use as it has greater solubility, see p9. Glycopyrronium 200mcg-1.2mg Used to reduce respiratory secretions if sedation is undesirable. Haloperidol 2.5-10mg Antidopaminergic antiemetic, see p19. Higher doses occasionally used in confusion, see p43. Extrapyramidal side-effects may occur with high doses. Hyoscine butylbromide 20-120mg Anti-spasmodic used to relieve intestinal colic. Useful for drying secretions and in intestinal obstruction through its antisecretory effect. Hyoscine hydrobromide 400mcg-2.4mg Useful for reducing secretions; some smooth muscle antispasmodic activity. An excellent sedative but may cause agitation or confusion (eg in elderly). Ketorolac 30-90mg Anti-inflammatory with powerful analgesic action. Levomepromazine 5-25mg (antiemetic, see p19) 25-100mg (sedative, see p43) Related to chlorpromazine but more potent. Metoclopramide 30-60mg Anti-emetic, see p19. Extrapyramidal effects may occur at higher doses. Midazolam 5-60mg Benzodiazepine sedative; antiepileptic; may be useful in neuropathic pain. Higher doses are only appropriate for terminal sedation. Morphine 5-300mg Specialist palliative care referral recommended at the top end of dose range. Octreotide Octreotide* 300-800mcg * Used in intestinal obstruction, see p21, and for fistulae, see p26. Oxycodone 5-200mg Alternative to diamorphine and morphine, but requires greater volumes. 30 * indicates that this is best managed by specialists BREATHLESSNESS Breathlessness is usually multifactorial. Investigations such as chest x-rays, scans and blood tests may be of limited value. A therapeutic trial of medications, either singly or in combination, is often necessary to find out what works in an individual patient. There is inevitably a psychological component - being breathless is always frightening and patients often have unspoken fears about how they will die. Causes / Risk factors A Impaired gas exchange. 1 Airflow obstruction a) Large airways: tumour extrinsic compression laryngeal palsy radiation stricture b) Small airways: lymphangitis carcinomatosa COPD, asthma 2 Decreased effective lung volume effusions pneumothorax extensive tumour collapse infection gross abdominal distension 3 Increased lung stiffness pulmonary oedema lymphangitis carcinomatosa fibrosis 4 Decreased alveolar gas exchange pulmonary embolism pericardial effusion thrombotic tumour fibrosis 5 Pain pleurisy chest wall infiltration rib/vertebral fractures liver capsule pain 6 Neuromuscular failure paraplegia chronic neuromuscular diseases phrenic nerve palsy cachexia paraneoplastic syndromes B Increased demand 1 Anxiety 2 Anaemia 3 Metabolic acidosis * indicates that this is best managed by specialists 31 Management General treatments Can be employed whilst investigating for an identifiable and correctable cause. General and specific managements should be used in parallel. Consider consulting the respiratory team. A Non drug treatments General and specific reassurance (that the patient will not suffocate). Explanation of the mechanisms of breathlessness. Fan or cool air across the face is often helpful. Proper positioning for easier breathing. Explore the significance of breathlessness for the patient. Breathing exercises, relaxation training, ‘pulmonary rehabilitation’ by counselling and readaptation physiotherapist/specialist nurse. Acupuncture, aromatherapy, reflexology. B Drug treatments Nebulised saline often helps where there are tenacious secretions. Opioids often help reduce the subjective sensation of breathlessness; there is no evidence that they shorten life. If opioid naïve, start on 2.5mg of oral morphine 4-hourly and titrate upwards. If the patient already takes morphine for pain, the dose may need to be increased by up to 50% for co-existing breathlessness. The use of nebulised opioids is not supported by scientific evidence; they may induce bronchospasm. Benzodiazepines are often used in combination with opioids for their anxiolytic effect. Use diazepam 2-15mg daily for background control with addition of quick-acting lorazepam 0.5-2mg sublingually for acute crises and panic. Midazolam 2.5-10mg sc stat or 5-50mg daily by csci if patient is not able to take oral medication. Oxygen has variable effects; it is difficult to predict who will benefit other than by therapeutic trial but patients with oxygen saturations <> 2.7 mmol/l; symptoms usually only become troublesome above 2.9 mmol/l; levels > 4 mmol/l may be fatal. 2 Any combination of the following: nausea, fatigue, loss of appetite, confusion or emotional disturbances, thirst, polyuria, constipation and abdominal pain. Causes / Risk factors 1 Bone metastases. 2 PTHrP-secreting tumours, eg carcinoma of lung. 3 Dehydration, renal impairment. 4 Tamoxifen flare. Management 1 Decide if further treatment is appropriate - is this a terminal event? 2 Relieve associated symptoms. 3 Correct dehydration using 2 litres saline iv per 24 hours. 4 If serum calcium > 3.0mmol/l, use iv bisphosphonates: pamidronate 90mg in 500ml saline over 2 hours, or sodium clodronate 1500mg in 500ml saline over 2-4 hours, or zoledronic acid 4mg in 50ml saline over 15 mins. Bisphosphonates take 48-72 hours to be effective, so avoid rechecking calcium before day 4. Effects last 20 to 30 days so recheck calcium three weeks after treatment. Oral bisphosphonates have no place in the acute treatment of hypercalcaemia but may be used to maintain normocalcaemia and as prophylaxis for myeloma and breast carcinoma. 56 * indicates that this is best managed by specialists USE OF STEROIDS General points • Dexamethasone is the preferred drug. • Prescribe as a single or 2 morning doses to avoid sleep disturbance. • Give a 5-7 day trial and stop if there is no benefit. Be clear about what objective benefit is sought, and keep under review. • Discuss potential benefits and side effects with patient and give steroid card. • If benefit achieved, reduce to lowest effective dose and then review regularly. • Stop if ineffective or when benefit lost (see below). • Consider monitoring plasma glucose levels. • Add gastric protective if also on NSAID or longer-term use. • Increase (up to double) the dose if on phenytoin or carbamazepine. Indications Initial dose, dexamethasone Brain tumour, SVCO, spinal cord compression: 8-16mg Nerve compression pain, liver capsule pain, intestinal obstruction, anti-emesis, bronchial obstruction, lymphangitis carcinomatosa, post-radiotherapy inflammation: 4-8mg Anorexia, fatigue: 2-4 mg Stopping steroids • Can withdraw immediately if less than 3 weeks and < 6 mg dexamethasone. • Otherwise tail off by 2mg every 5-7 days until 2mg od, then by 0.5mg every 5-7 days. • After cranial irradiation start reducing 2 weeks after completion of treatment, eg 16 - 12 - 8 - 6 - 4 - 2mg at intervals of 3 days; if symptoms recur, return to previous effective dose. Common problems (usually related to higher or longer-term doses) • Early: oral thrush, hyperglycaemia, heartburn, sleep disturbance, mania. • Late: proximal myopathy, skin atrophy, change in face and body shape, which may cause significant psychological morbidity. Steroid equivalents (approximate) Dexamethasone Betamethasone Prednisolone Hydrocortisone 2mg 2mg 15mg 50mg * indicates that this is best managed by specialists 57 THE LAST FEW DAYS OF LIFE Principles These are laid out in the Liverpool Integrated Care Pathway for End of Life: • primary goal is to recognise, diagnose and relieve symptoms effectively; • review all drugs and keep only the essentials (normally stop IV infusions); • avoid all non-essential interventions; • ensure effective communication amongst all involved; • ensure practical and emotional support offered to family and carers; • check religious and cultural needs. Respiratory secretions Retained secretions cause noisy breathing which is unlikely to distress the dying patient but can be very upsetting for family and carers. Causes include: • altered conscious level and suppressed cough reflex; • inability to swallow due to sedation or neuromuscular dysfunction (antimuscarinics likely to be helpful); • bronchopneumonia (simple postural drainage and suction if appropriate); • fluid overload due to IV infusions or in association with heart failure. Management • Explain to relatives that the patient is unlikely to be distressed by this. • Careful repositioning of the patient with suction if appropriate. • Antimuscarinic drugs for upper respiratory secretions (see over). • Discontinue IV infusions. • IV diuretic for heart failure and insert urinary catheter. • Fastidious mouth care is essential. Pain Many patients develop pain in the last few days of life having been previously pain free. This may be exacerbated by stiffness due to immobility. Management Morphine or diamorphine will suffice for most patients although in rare cases alternative opioids may be necessary. NSAIDs or midazolam may reduce stiffness and discomfort due to immobility. Nausea and vomiting Usually less of a problem at this stage as oral intake becomes minimal. If there is intestinal obstruction, residual intestinal contents may be regurgitated. Management • Antiemetics given by csci via syringe driver (see p28 and see over); • Rarely a naso-gastric tube will be required. Terminal restlessness See p44. 58 * indicates that this is best managed by specialists Prescribing guidelines Patients often develop symptoms in the last few days of life but are unable to swallow oral medication. Syringe drivers are often required, and the anticipation of problems together with out of hours access to syringe drivers and medication are essential components of good palliative care. The following drugs should be prescribed prophylactically on a prn basis for all dying patients. They can all be given subcutaneously (sc). 1 Strong opioid injection (according to local availability): a For opioid naïve patient prescribe morphine or diamorphine 2.5-5mg. b For patients already taking oral morphine prescribe sc diamorphine (1/3 oral dose) or morphine (1/2 oral dose) for use if swallowing becomes difficult. See p10 for further detail on opioid equivalents; see below if syringe driver needed to give drugs by continuous sc infusion (csci). 2 Antiemetic injection: a Levomepromazine 5mg qds (or 12.5-25mg/24hrs by csci). b Cyclizine 50mg tds (or 150mg/24hrs by csci) c Metoclopramide 10mg qds (or 40mg/24hrs by csci). 3 Sedative injection: a Midazolam 2.5-5mg (or 20-100mg/24hrs by csci). b Levomepromazine 5mg qds (or 25-100mg/24hrs by csci). c Hyoscine hydrobromide 200-400mcg q4h (or 1.2-2.4mg/24hrs by csci). 4 Antimuscarinic injection to reduce secretions: a Glycopyrronium 400mcg tds (or 1.2mg/24hrs by csci). b Hyoscine hydrobromide 300-600mcg q4h (or 1.2-2.4mg/24hrs by csci). Syringe driver If more than 2 doses of any of these drugs are needed per day then consider starting a subcutaneous infusion using a syringe driver. The initial dose of diamorphine or morphine sulphate is calculated from the total number of prn injections given in the previous 24 hours, but must also take into account previous analgesia (see p10 for 24 hour oral morphine dose equivalents). Fentanyl and buprenorphine patches As a general rule these are not a good choice for end of life analgesia primarily because dose titration is too slow. However if the patient already has a patch in situ continue to change this as before whilst adding morphine sulphate or diamorphine injections either prn or by continuous infusion via syringe driver. Patch strength Additional s/c diamorphine or morphine prn dose 24hr dose in syringe driver For each 25mcg/hr fentanyl 5mg 20-30mg or 35mcg/hr buprenorphine See also pp10-11. * indicates that this is best managed by specialists 59 PSYCHOLOGICAL, SPIRITUAL AND SOCIAL CARE The primary task when faced with spiritual questions is to help the person towards some resolution. Palliative care extends far beyond pain relief and the alleviation of symptoms. Psychological, spiritual and social needs of both patient and their family/carers should be addressed. This does not necessarily require specialist help - all health professionals should be prepared to make initial assessments and identify these issues. This holistic assessment is important in ensuring that the patient and family have optimal support in any care setting. It also ensures that discharge planning is effective (hospital/hospice staff should check that these plans are acceptable to the patient, family, carers and Primary Health Care Team). The framework for needs assessment should include: • Psychological needs; • Spiritual issues; • Social needs; • Information needs; • Carers’ needs. Many factors influence the way in which patients and families cope with their illness and the following need to be considered during an assessment. • The history of the illness and their understanding of what is happening, including their emotional and psychological response. • How the illness is affecting the person’s ability to carry out their role, for example as parent, lover, breadwinner etc. • Family history - who is around, where are they, how important are they, how supportive are they? Constructing a family tree (genogram) is often helpful both for establishing relationships and for use as a therapeutic tool in helping people talk about their issues. • Life stresses - what is happening with regard to money, jobs, housing, children, sources of support etc. • Hopes and fears - what is the worst thing that can happen, what are the plans for the future, what losses and disappointments have occurred, what unfinished business is there, and what do they still wish to accomplish? During assessment it should become apparent whether further expert professional help is required for psychological, spiritual and social care. Those available will include specialist palliative care staff, clinical psychologists, chaplain/spiritual advisors, and adult and child social workers. 60 * indicates that this is best managed by specialists BREAKING BAD NEWS Bad news is any information which alters a patient’s view of their future for the worse - the bigger the gap between expectation and reality the worse the news is. Giving bad news means entering a therapeutic dialogue of listening and responding which will affect how patients and families will cope. The aim is to: • maintain trust between patient, family/carer and health professionals; • enable appropriate adjustment to the reality of the situation; • encourage informed choice of management options; • reduce uncertainty about the future or at least address it; • enable patients to regain a feeling of some control over their situation. The following framework describes one approach. 1 Preparation • Know the facts and the potential management plan. • Arrange for privacy, sufficient seating and avoidance of interruptions. • Whenever possible offer the patient the chance to have a close family member or friend present. 2 Assess understanding • “What do you understand about your illness/what is happening?” • This may need to be repeated as you give further information. 3 Check that more information is wanted and at what level • Again this may need to be repeated as you give further information. 4 Allow denial • Allow the patient to control the pace of information flow, and to whom the information should be given. 5 Sharing the information • Start from where the patient is, give warning shots and further information in small chunks. Know when to stop. • Be clear and simple, avoiding jargon, and above all be gentle. • Avoid assumptions about their understanding i.e. check that they have heard what you believe you have said. 6 Elicit concerns • What is worrying the patient most? 7 Respond to the patient’s feelings • Identify the patient’s feelings and acknowledge them. • Listen for and observe the emotional content and behaviour. • Allow them time to think through the situation and ask questions: “Is there anything else you’d like to say or ask me?”. * indicates that this is best managed by specialists 61 8 Summary and plan • Summarise what has been said, emphasising the positive. • Outline future treatment if appropriate, using written or printed material if possible. • Foster realistic hope, e.g. “We may not be able to cure you but there are things we can do to make you feel better and cope with your illness”. • Recheck their understanding. 9 Make arrangements for further contact • Ask who may be told about the diagnosis/information. 10 Ensure others are informed of what was said • Tell the General Practitioner and other staff on duty as soon as possible. • Record as exactly as possible what was said, so that it can be repeated later and to avoid misunderstanding. • Giving the patient a recording of the interview is popular and effective. Remember • Make sure the patient feels the centre of attention. • Much of what you communicate is by non-verbal means and behaviour. • Move at the patient’s pace, giving information that is appropriate for that time. • If using euphemisms, try to find out what they understand by these words. • Express your humanity and warmth, and interest in their care. • Breaking bad news does not have to be done at one session, it is often best done in stages. • Do not be afraid of them expressing negative feelings or crying. • Be prepared for an initial stunned silence or anger. • Ensure that you are answering the question that you are being asked. • Avoid jargon. • Do not tell lies. • Some direct questions are best answered initially by asking “what makes you ask that?”. This may enable them to explain the worry behind the question. • It is a breach of confidentiality to tell relatives without the patient’s consent, where the patient has the capacity to agree to or refuse disclosure. Further reading Buckman R and Kason Y (1992) How to Break Bad News: A Guide for Healthcare Professionals, Papermac. Peter Kaye (1996) Breaking Bad News a Ten Step Approach: EPL Publications. 62 * indicates that this is best managed by specialists DEALING WITH DENIAL AND COLLUSION Denial Denial is a basic coping mechanism that allows us to continue to function when faced with information or events with which we cannot cope. It may be practised by the patient, family or professionals. Denial is not necessarily unhealthy and can be normal, as in the first stage of accepting bad news. However, if taken to extremes or creating situations that are harmful, such as preventing appropriate treatment, adequate symptom control or future planning for dependents, it may be appropriate to explore the denial. Assessment • Is it healthy or unhealthy? That is, is it reducing or increasing distress? • Is there an appropriate reason for challenging the denial? • Is it really denial? Many people have a good understanding of the situation but do not wish to talk about it. • Is other health professionals’ denial contributing? Management 1 Gently explore what the person understands of what they have been told. 2 Using the framework outlined in Breaking bad news (see p60), gently move the person towards a better understanding of reality, particularly with regard for the particular need identified for challenging the denial. It is often helpful to use such phrases as “What if?” or “Lets look at the worst scenario even if it may not happen”. 3 Be prepared to modify denial in stages and as far as possible at the patient’s pace; and accept that it is unrealistic to expect all patients to come to terms with their mortality. 4 Ensure that extra support is available following the challenging of denial. 5 Alert other health professionals involved of any changes in the patient’s understanding. * indicates that this is best managed by specialists 63 Collusion Collusion occurs when the family conspire among themselves or with professionals to withhold information from or lie to the patient. This is often well intentioned, acting in what is believed to be the best interests of the patient. Ethically and legally, the patient has the right to information and has to give permission for disclosure of information to the family. Management 1 Explore the family’s understanding and reasoning: • establish whether they are trying to protect themselves or the patient; • recognise that they may have valid concerns about the patient’s capabilities and past behaviour patterns; • show understanding of their situation. 2 Reassurance and explanation: • reassure that you will not walk in and impose information; • explain that the patient has a right to information, if requested, and honesty is an important part of maintaining trust in a doctor-patient relationship; • explain the consequences of living out an ever increasing lie; • explain that if the patient asks direct questions, their understanding and wishes will be explored before answering the question appropriately and sensitively; • offer to facilitate a joint conversation between the family and patient if they are finding it too difficult. 3 Gently explore the patient’s understanding, and assess their desire for further information. Pass this on to the family, with the patient’s consent, to enable more open communication. Occasionally patients collude with professionals to withhold information from their family. This is more difficult as the patient has to give permission for disclosure of information, but the principles are the same as above - exploration of reasoning; explanation about consequences; reassurance of sensitive handling; and offer of facilitation. 64 * indicates that this is best managed by specialists SPIRITUAL CARE Introduction Spiritual care is one of the central aspects of palliative care. It is difficult to define, but any problem, conversation or contact may contain spiritual as well as physical, psychological or social issues. Spirituality is to do with how we live and what we treasure and value. Spirituality is relational in its expression, i.e. feeling a need to connect with someone or something. All patients have spiritual needs while only some will have religious needs. Spiritual distress When a person experiences a life crisis they will look to their spiritual values, beliefs, attitudes or religious practices to make sense of it. If these do not enable them to cope with the crisis, then they may experience spiritual distress. Expressions of spiritual distress include: • fear about the future, about dying and what happens after death; • loss of identity or roles (parenthood, work etc); • helplessness and loss of control over what is happening; • anxiety about relationships, body image or sexuality; • suffering excessively from physical symptoms, especially pain; • anger anger; • guilt or shame; • hopelessness hopelessness, despair, feeling alone or unloved; , • exploration of meaning and purpose of their life; • breaking with religious or cultural ties. Dealing with spiritual distress The primary task when faced with spiritual questions is to help the person towards some resolution and understanding. Accept that there is unlikely to be a specific answer - it’s OK not to know. Listen attentively and be prepared to face uncertainties - just by “being there” you can help the patient to make connections and embark on their own search for meaning. Do not be afraid to ask simple questions about their fears, losses, feelings, “the future”, sense of control, past regrets, values, beliefs and religious needs. Offer a particular group or person such as a chaplain if you feel out of your depth or there is a requirement for a religious input. * indicates that this is best managed by specialists 65 Basic principles 1. Provide a safe caring environment. • Good symptom control. • Show willingness to listen. • Value their role and appearance, and belief systems. 2. Attend to: • Signs of their wishing to explore spiritual issues. Ask yourself “Why am I being told this? And why now?” • Your own verbal and non-verbal behaviour and reactions (patients can be reluctant to embarrass professionals if they sense that they are causing discomfort). 3. Listen to: • Questions. • Expressions of fear, anger, loss etc. • Their story. 4. Assess in terms of : • Past, present and future. Ask simple questions as outlined above. • What help is needed. 5. Reassure and help with: • Good physical care in illness and dying. • Respect for their integrity, worth and values. • Information as requested. • “Unfinished business”. • Personal support - “being alongside”. • Care for family and carers. • Reviewing of life. • Arranging provision of spiritual counselling if needed e.g to help face mortality. • Arranging provision of religious and sacramental care, according to faith. • Above all - be there. 6. Attend to yourself: • Facing intense feelings or distress can leave us feeling uncomfortable, inadequate, helpless or vulnerable. The task is to live with our own uncertainties. It is therefore important to explore difficult issues or share concerns with colleagues, e.g through individual or group supervision. Further reading Speck P. Being there: pastoral care in times of illness. London: SPCK, 1988. Mount B. Existential suffering and the determinants of healing. Eur J Pall Care 2003; 10(2) supplement. Stanworth R. Recognising the spiritual needs in people who are dying. Oxford: OUP, 2004. 66 * indicates that this is best managed by specialists CULTURE In our society there is a wide variety of people of different faiths, ethnic backgrounds and countries of origin. Within these groups, each individual will express their cultural attitudes uniquely, as they are influenced by upbringing, background, environment, beliefs and life experience. Cultural attitudes can particularly influence: • language and the use of colloquialisms; • the roles of the family; • how symptoms or illness are described and understood; • ethical issues, including autonomy and confidentiality; • attitudes towards conventional Western therapies, complementary or alternative therapies, food and diet; • attitudes towards death and dying; • rituals surrounding death; • preferred place of care - home, care home, hospital or hospice; • acceptance of help and support. Health professionals should show their awareness by: • ensuring that appropriate language interpretation services are used; • demonstrating willingness to listen and a wish to understand cultural differences and implications; • meeting specific requirements (such as food, privacy, opportunity to practice religious observances etc) wherever possible; • being prepared to negotiate boundaries and details of care; • ensuring that there is access to an appropriate religious advisor. Do not make assumptions-ASK Remember that each person is unique, regardless of cultural background and professed faith. Further reading 1. Neuberger J. Care for Dying People of Different Faiths. Oxford: Radcliffe Medical Press, 2004. 2. Henley Q, Schott J. Culture, Religion and Patient Care in a Multiethnic Society. Age Concern Books, 1999. * indicates that this is best managed by specialists 67 BEREAVEMENT Grief is a natural process experienced by anyone who has to adjust to a significant loss. An appreciation of what is ‘normal’ is required in order to recognise when and what type of intervention is needed. Parkes describes bereavement in terms of phases of grief: 1 Initial shock, numbness and disbelief before emotional reality of the loss is felt. Seeing the body after death, attending the funeral or visiting the grave are often important in facilitating acceptance of the reality of the death. 2 The pain of separation which affects behaviour and emotions. The bereaved usually suffer overwhelming periods of sadness as they are faced with the day-to-day reality of their loss. They may try to reduce this by avoiding reminders of the deceased. They may also find themselves ‘searching’ for the deceased, dreaming about them or actually seeing or hearing them. Visual or auditory hallucinations at this time are normal. Agitation, restlessness and an inability to concentrate can result from the conflict between this searching and avoiding behaviour - attempts to avoid the reality of the situation. A range of emotions other than sadness may be experienced. Anxiety may be due to loss of the familiar routine and feelings of insecurity. Anger may be directed towards the deceased for abandoning them, towards God, or (justly or unjustly) towards professionals. It may simply manifest as general irritability. Feelings of guilt may occur when anger is directed internally. It is common for physical symptoms related to over-activity of the autonomic nervous system to be experienced, eg palpitations, insomnia, diarrhoea and fatigue. A transient hypochondriasis can occur, but it is abnormal if it persists. 3 Despair or depression. As the pangs of grief and anxiety reduce in frequency and severity the bereaved may lose interest and purpose in life. They feel hopeless and become withdrawn. This may last for months. 4 Eventually the loss is accepted and life without the deceased is adjusted to. 5 The final phase of resolution and reorganisation is entered as emotional energy is reinvested in new relationships and activities, although anniversaries often trigger renewed grief. 68 * indicates that this is best managed by specialists For some, part of the work of grieving may be undergone before the actual death of the deceased (anticipatory grieving). Although described in sequence, bereavement reactions usually oscillate between phases. For most people, no formal psychotherapeutic intervention is needed as their personality, previous life experiences, social network and loving relationship with the bereaved enables them to come to terms with their loss, and often to grow personally through it. All that is often required is a watchful eye to check that their grief is continuing normally. 6 For those with unresolved/abnormal grief further intervention is required. The needs of children and adolescents are often quite complex and they may also benefit from specialist support. Recognition of those likely to develop an abnormal grief reaction can also allow early supportive intervention and prevent its development. Risk factors include: • an unexpected/untimely death; • an unpleasant death; • an ambivalent relationship; • an excessively dependent relationship; • a child/adolescent (may be protected/excluded); • social isolation; • excessive use of denial, preventing anticipatory grieving; • unresolved anger; • previously unresolved losses; • previous psychiatric illness; • a history of alcoholism/drug abuse; • other concurrent stressful life events. For many, a trained volunteer who listens may address the need of the bereaved to recognise and express their feelings and fears, enabling them to make sense for themselves of the events which have occurred. Reassurance that what they are experiencing is ‘normal’ is extremely helpful. A chaplain may also be helpful to those whose faith is shaken, destroyed or awakened. Some find meeting with a group of individuals who have undergone a similar experience can be supportive. These groups may or may not have a trained facilitator. Written information explaining what may be experienced and giving useful contact numbers is often appreciated. * indicates that this is best managed by specialists 69 UNRESOLVED/ABNORMAL GRIEF There is no clear boundary between what is ‘normal’ and what is ‘abnormal’ grief, and it is often a question of unusual intensity, of reaction or timing. The following guide indicates when professional intervention may be required. 1 Delayed grief is defined by an absence of grieving within the first weeks or months after the death. It is often precipitated many years later by further loss. It is more likely to be severe and chronic when it finally occurs. Help is often needed in emotionally accepting the reality of the past loss. 2 Inhibited grief occurs when all reminders of the bereaved are avoided. This mechanism of avoidance may work for some, but can present as irritability, restlessness or depression. Guided mourning is employed to encourage the bereaved to face the reality of the loss. 3 Chronic grief (mummified grief) may be severe and occurs when a person fails to progress through all the tasks of mourning. There is no fixed time period. Assistance is needed in helping the bereaved to move on in the grieving process. 4 Persistent hypochondriasis can occur and may block grief. The bereaved may take on the symptoms of the deceased or develop symptoms related to anxiety or depression. Explaining to the patient what is happening may be all that is required. However, note that mortality and morbidity of widows and widowers is increased in the first year after the death, mainly due to cardiovascular disease. 5 Psychiatric disorder. A severe depressive illness may develop with delusional ideas of guilt and suicidal intent. It can require hospitalisation. Mania can be precipitated as can phobic disorders, and alcoholism and addiction to drugs, especially hypnotics. Some of these abnormal grief reactions can be dealt with by the primary health care teams, social workers or trained counsellors. In addition, many areas have their own voluntary bereavement and counselling groups including branches of CRUSE (126 Sheen Road, Richmond, Surrey TW9 1UR). See health centres, hospitals or Citizens’ Advice Bureaux for information, or contact The National Association of Bereavement Services, 10 Norton Folgate, London E1 6DB. Others require specialist help from psychotherapists or psychiatrists, and it is important for all professionals to realise their own skills and limitations. FORMULARY This list of drugs, dressings and other preparations recommended in this Handbook is intended as an aid to pharmacists and others. The list is neither exhaustive nor exclusive, and other products may be recommended or be more appropriate in some circumstances. Often, only one drug is listed from a whole class of compounds: this should not be taken to imply that other preparations may not be equally effective. Generic names are given for drugs with single constituents, proprietary names for most compound formulations and for dressings. Actisorb plus: see dressings 49 Adcortyl 23 Adrenaline 49, 53 Alfentanil 10, 12, 15 Allevyn Adhesive: see dressings 48, 49 Aluminium hydroxide 45 Amitriptyline 14, 15, 23, 38, 40, 46 Aquacel: see dressings 49 Arachis oil enema 25 Ascorbic acid 47 Aspirin 23, 45 Baclofen 15, 34 Betamethasone 56 Bisacodyl 25 Botulinum toxin 23 Bupivacaine 15, 33 Buprenorphine 11, 12, 58 Carbamezapine 15, 35, 36 Cavicare: see dressings 49 Cavilon: see dressings 48 Chlorhexidine 22 Chlorphenamine 45, 49 Chlorpromazine 29, 34 Cimetidine 45, 46 Clinisan: see dressings 48 Clinisorb: see dressings 49 Clomethiazole 40 Clonazepam 15 Clonidine 15, 46 Co-codamol 6 Codanthramer 25 Codanthrusate 25 Codeine 10, 26, 33 Colestyramine 45 70 Cophenotrope 26 Cyclizine 8. 18, 19, 21, 29, 58 Danazol 45 Dantrolene 15 Dexamethasone 14, 15, 18, 19, 21, 24, 27, 29, 32 34, 35, 36, 37, 41, 43, 46, 56 Diamorphine 8, 9, 10, 12, 21, 29, 53, 57, 58 Diazepam 14, 15, 29, 31, 34, 36, 39, 44, 53 Diclofenac 6, 46 Dihydrocodeine 6 Docusate sodium 21, 25 Domperidone 18, 19, 21, 27, 34 Dosulepin 14, 15, 38, 40 Dressings: alginate 48, 49 charcoal 48 film spray 48 foam 48 hydrocolloid 48, 49 hydrogel 48, 49 low adherence 48 odour absorbent vapour permeable 48 DuoDERM: see dressings 48 Entonox 15 Erythromycin 18 Etamsylate 53 Fentanyl 10, 11, 12, 15, 58 Fletcher’s phosphate enema 25 Fluconazole 23 Furosemide 27, 52 Gabapentin 15, 45 Gelclair 23 Glyceryl trinitrate 14 Glycopyrronium 23, 29, 32, 46, 58 Granuflex: see dressings 48, 49 GranuGel: see dressings 48, 49 Haloperidol 8, 18, 19, 21, 29, 34, 43 Helium/oxygen 32 Heparin 32, 54 Hydrocortisone 23, 56 71 Hydrogen peroxide 47 Hydromorphone 10, 12 Hyoscine butylbromide 14, 21, 23, 29, 32 Hyoscine hydrobromide 18, 19, 21, 23, 29, 32, 58 Ibuprofen 6 Intrasite: see dressings 48, 49 Kaltostat: see dressings 49, 53 Ketamine 15 Ketorolac 29 Lactulose 25 Levomepromazine 18, 19, 21, 29, 43, 44, 58 Lidocaine 23, 47 Loperamide 21, 26 Lormetazepam 40 Loratadine 45 Lorazepam 31, 36, 39 Macrogols 21, 25 Magnesium hydroxide 21, 25 Medroxyprogesterone Megestrol acetate 24 Menthol 33 Menthol in aqueous cream 45 Mepitel: see dressings 48 Methadone 9, 12, 15, 33 Metoclopramide 18, 19, 21, 27, 29, 34, 58 Metronidazole 26, 47, 49 Midazolam 15, 29, 31, 32, 36, 39, 43, 44, 53, 57, 58 Mirtazapine 24, 38, 45 Misoprostol 6, 14, 18 Morphine 7, 8, 9, 10, 11, 12, 15, 23, 29, 31, 33, 47, 49, 57, 58 Naloxone 8, 12 Naltrexone 45 Naproxen 6, 46 Nifedipine 14, 34 Nitrous oxide 15 Nizatidine 21 Nystatin 23 Octreotide 21, 26, 29 Ondansetron 19, 45 Opsite: see dressings 48 72 Oxybutynin 15, 46 Oxycodone 9, 10, 12, 29 Oxygen 31, 43 Pamidronate 14, 55 Pancreatic enzymes 26 Paracetamol 6, 27, 46, 47 Paroxetine 45 Pethidine 10 Phenobarbital 36, 44 Phenol 16 Phenytoin 35, 36 Pilocarpine 23 Prednisolone 24, 56 Pregabalin 15 Prochlorperazine 18, 19, 29 Propranolol 23, 39, 46 Propantheline 14, 46 Ranitidine 21, 34 Rifampicin 45 Risperidone 43 Saliva-Orthana 23 Senna 25 Silver sulphadiazine 47 Simeticone 33, 34 Simple linctus 33 Sorbsan: see dressings 48, 49 Sodium chloride 29, 49 Sodium clodronate 55 Sodium hypochlorite 23 Sodium picosulphate 25 Sodium valproate 15, 36 Spironolactone 27 Sucralfate 23, 53 Temazepam 40 Thalidomide 46 Tinct benz co 33 Tizanidine 15 Tolterodine 15 Tramadol 6, 10 Tranexamic acid 53 Vitamin K 53 73 Warfarin 32, 54 Zinc 47 Zoledronic acid 14, 55 Zolpidem 40 Zopiclone 40 74 ACKNOWLEDGEMENTS This advice on clinical management is derived from the Bath District Health Auth- Authority clinical standards for palliative medicine and terminal care (1991), revised by ority Dr Roderick MacLeod and Jane Vella-Brincat, Dorothy House Foundation, in 1993. The format and content were revised in 1995 by Dr Chris Higgs, Jane Vella-Brincat and Clare Spencer, Dorothy House Foundation/St Martin’s Hospital Pharmacy, with additions from Dr Patricia Needham, Dorothy House Foundation and Dr Christine Wood, Salisbury Palliative Care Services. For the fourth edition, the publication was adopted in 1997/8 by the specialist palliative care units in Wessex. A fifth edition was published in 2002, and this revision was undertaken in 2006/7 by the Wessex Palliative Physicians under the chairmanship of Dr Stephen Kirkham (Poole): Dr Lara Alloway (Basingstoke), Dr Harriet Bush (Southampton), Dr David Butler (Southampton), Dr Jane Bywater (Basingstoke), Dr Tony Dancyger (Swindon) Dr Carol Davis (Southampton), Dr Ann Goggin (Southampton), Dr Chris Higgs (Bath), Dr Ian Johnson (Isle of Wight), Dr Huw Jones (Portsmouth), Dr Helen Kirk (Southampton), Dr P-J Morey (Portsmouth), Dr Rosamund Pugh (Christchurch), Dr Fiona Randall (Christchurch), Dr Adrian Ruddle (Portsmouth), Dr Richard Sloan (Dorchester), Dr David Spencer (Lymington), Dr Karen Steadman (Dorchester), Dr Michael Tattersall (Swindon), Dr Bridget Wood (Lymington), and Dr Christine Wood (Salisbury). Additional invaluable assistance was provided by colleagues within our individual multiprofessional teams. Subediting by Stephen Kirkham Typesetting and printing by Hierographics Ltd, Designer House, Sandford Lane Industrial Estate, Wareham, Dorset. BH20 4DY. 01929 554454 Copyright © Wessex Palliative Physicians 2007 75 NOTES 76 NOTES 77 NOTES 78 79 NOTES 80 NOTES