Specialist Palliative Care Guidelines and Management Plan for patients with severe advanced respiratory diseases.

Transcription

1 Specialist Palliative Care Guidelines and Management Plan for patients with severe advanced respiratory diseases. March, 2015 Review date: March,

2 Content About the guidelines...3 The Background...4 Referral to Specialist Palliative Care..5-7 Symptom control General guidelines....8 Refractory breathlessness Cough...14 Sputum Oxygen..16 Anorexia/cachexia Anxiety and depression Fatigue, energy management Pain control Nausea and vomiting Constipation Dry mouth..30 Last days of life Appendix 1 References Appendix 2 Borg scale.35 Appendix 3 Well-being Assessment Tool Acknowledgement..38 2

3 About guidelines These guidelines have been developed collaboratively by members of Specialist Palliative Care, Respiratory, Community COPD and Physiotherapy teams of Walsall Healthcare NHS Trust, with help and support of a Walsall GP representative and a Community Matron (see page 38). The guidelines serve as a brief guide in palliative, supportive and end of life care of patients suffering from severe advanced respiratory diseases. They are intended for healthcare professionals who manage these patients, however they are written presuming a proper use of professional knowledge and they should not be used for direct advice only. All information provided is evidence- based with emphasis on good medical practice, but it is not exhaustive. We are aware that respiratory diseases are a heterogeneous group with differences in etiology and management of particular disease. However, when the symptoms become intractable, do not respond to the maximised treatment and the only management is palliative, the usual approach is identical regardless of the disease. 3

4 Background Respiratory diseases represent a major cause of morbidity and mortality in the UK and worldwide with COPD being currently the fourth common cause of death worldwide. There is great evidence that patients with advanced respiratory diseases suffer from many distressing physical and psychological symptoms (Tranmer et al, 2003). Symptom burden in patients with advanced COPD is at least as severe as in patients with advanced cancer (Hill and Muers 2000). Some symptoms such as breathlessness, fatigue and anxiety are even more common than in patients with advanced cancer (Solano et al, 2006). Patients with advanced COPD are often housebound and receive little support from community services (Elkington et al 2004, 2005). They suffer from a high degree of social isolation (Skilbeck et al 1998, Elofsson and Ohlen 2004) and their carers suffer as well (Jones et al 2004, Seamark et al 2004). Studies have shown that patients with end-stage COPD often prefer treatment focused on comfort and they do not wish to be intubated or resuscitated (Claessens et al 2000). However in reality they are more likely to be admitted to acute hospitals and treated aggressively, they are less likely to know that they are dying and less likely to receive treatment for symptom control (Lynn et al 2000, Edmonds et al 2001, Mc Kinnley et al 2004). Conclusion Patients with advanced chronic respiratory diseases have poor quality of life. They suffer from many distressing symptoms and their physical, psychological and spiritual needs are not met. They would benefit from holistic palliative care approach. 4

5 Referral to Specialist Palliative Care Patients with advanced progressive respiratory diseases who are at risk of dying in the next 6-12 months should be identified and have their needs assessed. Alongside their respiratory treatment they should all receive the best supportive and palliative care which should be based on their needs and delivered by an integrated multidisciplinary team lead by their GP. Those patients who suffer from complex or uncontrollable physical or psychological symptoms should be assessed for referral to Specialist Palliative Care. Referral Criteria to Specialist Palliative Care: a) The patient has had a diagnosis of chronic respiratory disease confirmed by a leading clinician (respiratory physician/gp) and attempts to optimise therapy including pulmonary rehabilitation where appropriate have been made. b) 2 or more apply: And Disabling dyspnoea impacting on activities of daily living despite maximised treatment. Other physical or psychological symptoms difficult to control despite optimising treatment. Recurrent hospital admissions, frequent domiciliary visits or use of A&E for treatment of respiratory infection and/or respiratory failure. Life expectancy less than 12 months (6-12 months). And c) The patient has knowledge and understanding of their disease, is aware of the reason for referral to Specialist Palliative Care and does consent to it. Or Decision of the patient to receive palliative care only. 5

6 Before you refer to Specialist Palliative Care please make sure that: a) You have had an open discussion with the patient and their family about their current condition and referral to Specialist Palliative Care. b) The patient has consented to referral. c) The reason for referral is stated clearly on the referral form, together with a brief explanation of how much the patient is aware of disease progression, what has been discussed so far and patient s/referrer s expectation from Specialist Palliative Care input. Please note the Specialist Palliative Care team may not take over the care of the patient but will act as source of support and advice for the keyworker Specialist Palliative Care can be delivered as: a) Telephone advice for specific symptom management only b) One-off assessment, preferable joint visit with the key worker c) On-going assessment d) Continuing support Collaboration and good communication between all services involved in the patient s care are absolutely crucial. In order to maximise patient s support and optimise coordination and delivery of care these patients should be (with their consent) on the GSF register and discussed at regular GSF meetings. 6

7 Referral to the Hospital Palliative Care Team and Community Palliative Care Team: a) Referral forms are available on Trust s intranet b) Urgent referrals must also be discussed over the phone: Hospital Palliative Care team contact details: Route 121 Walsall Manor Hospital Moat Road WS2 9PS Tel: ext or 7324 Fax: Community Palliative Care contact details: Walsall Palliative Care Centre Goscote lane Walsall WS3 1SJ Tel: Fax

8 Symptom control General recommendations: Continue Palliative and Supportive care alongside active respiratory treatment (including pulmonary rehabilitation or home exercise programmes, if appropriate). In case of deterioration assess for reversible causes like infection, pleural effusion, anaemia etc. and treat them first, if appropriate. Always apply a holistic approach including physical, psychological, social and spiritual aspects when assessing and treating symptoms. Always consider a non-pharmacological approach alongside the pharmacological one Assess treatment effectiveness and review for possible side effects on a regular basis. Close cooperation with the GP, respiratory team and other members of the integrated team and good communication between services is absolutely essential. 8

9 Refractory breathlessness Ask Is there any underlying reversible cause which should be treated first? Is the patient eligible for Lung Volume Reduction Surgery (LVRS) or Endobronchial Valve Treatment? Is the treatment of the respiratory disease including pulmonary rehabilitation (if appropriate) maximised? If yes and still breathless consider: 1. Non-pharmacological treatment: a. Education and provision of information b. Increase air flow/ use of fans c. Relaxation techniques d. Anxiety management e. Complementary therapy aromatherapy, aroma inhalers f. Occupational therapy (OT) Undertake environmental and functional assessment Manage deteriorating function Assess and support patient to carry out personal care and domestic activities Provide aids/ equipment to support daily living, & self-management techniques to optimise independent activities of daily living Provide mobility aids for safe moving & handling if appropriate and manage deteriorating function Fatigue assessment and intervention as appropriate with energy conservation techniques, goal planning, pacing, diet, exercise and anxiety management Provide seating, position & manual handling advice for patient & carers g. Physiotherapy Positions of ease Breathing control techniques Breathing retraining Exercise prescription Chest clearance techniques Maintaining mobility/ provision of walking aids h. Acupuncture i. Psychological support 9

10 2. Oxygen if breathless and hypoxic (see the chapter Oxygen). 3. Opioids The only drugs with proven effect on refractory dyspnoea ( see evidence appendix 1) More beneficial for dyspnoea at rest than on exertion. Start low and go slow approach is recommended. Titrate slowly up to achieve the lowest effective dose. Discontinue if no effect or side effects develop. Decision making prior to commencing treatment with opioids Every patient with refractory breathlessness affecting their quality of life should be offered treatment with opioids. An individualised approach is needed. Balance the risks and benefits. Discussion with the patient and explanation of the plan prior to commencing the treatment is recommended. Explore any fears, obtain patient s verbal consent. Rate the breathlessness prior to the treatment (numerical scale 0-10, VAS- visual analogue scale, BORG, see appendix 2). Which opioid/dose/frequency? Various regimes have been tested in different studies and there is not one recommended approach. The following recommendation is based on the best available evidence. Unless contraindicated start with short acting morphine - Morphine sulphate oral solution, 10mg/5ml, Oramorph Recommended starting dose is 2 mg 2.5mg ( ml) of Oramorph BD and PRN up to QDS, lower in patients in moderate renal failure or frail elderly, avoid in significant renal failure (egfr <30) Watch for effectiveness and side effects of the treatment. If tolerated well but not fully effective increase the frequency in a few days time to TDS and later up to QDS. If still breathless and no side effects from the opioids titrate the dose slowly up (approximately every 4-7 days) under close monitoring. The dose increments should not exceed 30-50% of the previous dose. If higher dose than 30 mg of oral morphine per 24 hours is needed, contact Palliative Care for advice. 10

11 Discontinue if no effect or side effects develop. If morphine is contraindicated, not tolerated or patient is in severe renal failure use oxycodone instead - Oxycodone hydrochloride, oral solution 5mg/5ml, Oxynorm. Oxycodone is approximately twice as potent as morphine; the starting dose should be 1 mg (1 ml) with the same frequency and titration regime as for morphine. Contact Palliative Care if help with titration is needed. Patient already on opioids? Contact Palliative Care for advice. Side effects of opioids: a. Mild: Nausea, vomiting always prescribe PRN antiemetic (Domperidone, Metoclopramide), usually resolves within a week. Mild drowsiness - usually resolves within a week, no treatment is needed. Constipation always prescribe laxative, never resolves. b. Severe: Sedation Confusion Hallucination Itch Myoclonic jerks Will require decreasing, switching or stopping the opioids. c. The most serious: Respiratory depression. Emergency, always requires urgent action: ABC approach, oxygen and administration of Naloxone. If opioids are started in a very low dose and titrated up cautiously, respiratory depression does not develop. Studies do not report a single case of respiratory depression. 11

12 4. Benzodiazepines Evidence does not support use of benzodiazepines for treatment of breathlessness alone (Cochrane review in 2011). Benzodiazepines reduce anxiety. Can be cautiously used when dyspnoea is associated with anxiety or panic. Dose and frequency Lorazepam - (shorter acting) 0.5mg sublingually PRN up to QDS. Some patients may require regular dosage. Diazepam (long acting) 2 mg OD up to TDS. Occasionally higher doses may be needed. Midazolam injection s.c. or via a syringe driver if patient is distressed, unable to swallow or does not respond to oral treatment. The usual starting dose is 2.5mg s.c. PRN. The dose may need decreasing in patients with severe respiratory or renal failure. Frequency of administration is usually 2-4 hourly. If 2 or more PRN doses are needed Midazolam may need to be delivered via the syringe driver. The usual starting dose is 5mg/24 hours. Some patients who are very distressed and agitated may need higher doses, seek advice from Palliative Care Team. CAUTION All patients should be closely monitored for excessive sedation. Be aware that very occasionally these drugs may cause respiratory depression. Doses of benzodiazepines should be halved in the elderly and patients with significant renal failure. 12

13 MANAGEMENT OF REFRACTORY BREATHLESSNESS Severe breathlessness Any underlying reversible conditions? Respiratory treatment maximised? Yes No Yes, still breathless No Treat it Follow these steps simultaneously Maximise treatment Consider oxygen if breathless and hypoxic Start 2-2.5mg oral morphine BD and PRN up to QDS. Slowly increase the frequency to TDS and later to QDS Consider nonpharmacological approach Associated anxiety or panic? Effective and no side effects? Continue with same dose Partially effective and no side effects? Continue and slowly titrate the dose up Severe side effects? Consider stopping it or switching to alternative opioid Yes No Consider PRN Lorazepam Consider Diazepam Consider sub-cut Midazolam Unable to swallow or severely distressed? 13

14 Cough Ask Are there any reversible causes of cough? (Nasal congestion, chest infection, reflux, ACE inhibitors...) If no Consider: 1. Non-pharmacological treatment: Very difficult to manage. Could try: Positioning Physiotherapy to facilitate maximal inhalation and adequate expiratory flow Acupuncture 2. Difficulties expectorating? Saline nebulisers: ml Sodium Chloride 0.9% PRN up to QDS to help expectoration. If viscous sputum consider Mucolytics (for details see chapter Sputum management). Consider provision of Oscillatory Positive Expiratory pressure (PEP) device if mucolytic treatment unsuccessful. Teach carers and family members manual chest clearance techniques if appropriate. Provide oropharyngeal suction if required and consented to by a patient. 3. If cough is irritating and dry consider cough suppressants: Simple linctus (15mg/5ml) 5-10ml PRN up to QDS. Codeine linctus 5-10 ml PRN up to QDS. Low dose of morphine solution 10mg/5 ml, 2 mg-2.5mg (1-1,25 ml) PRN up to QDS or regular BD slowly increased up to QDS if needed. Methadone linctus 2mg/5ml, initially 1-2 mg nocte, increase to BD if needed. 14

15 Sputum management Ask Is there an underlying chest infection? Are antibiotics needed? If no consider: 1. Non-pharmacological measures: Physiotherapy breathing exercises ( active cycle of breathing and forced expiratory technique or autogenic drainage), postural drainage, chest percussion, chest vibration Positioning Consider oscillatory positive expiratory pressure (PEP) device if appropriate Some patients may prefer to use an oropharyngeal suction if secretions are stuck in the back of the mouth 2. In difficulties expectorating or in the presence of viscous sputum consider: Saline nebulisers: ml Sodium Chloride 0.9% PRN up to QDS to help expectorate Mucolytics: (caution if history of peptic ulceration). Carbocisteine mg TDS. Erdosteine 300 mg BD only for maximum of 10 days For excessive viscous mucous Erdosteine can be taken together with Carbocisteine 7-10 days only. 3. Antisecretory drugs: Hyoscine butylbromide injection 20 mg s.c. PRN 2-4 hourly or via syringe driver up to the maximum 120 mg/24hours. Glycopyrronium bromide injection, 200 micrograms s.c. PRN 2-4 hourly or via syringe driver up to the maximum 1200 micrograms/ 24 hours. Hyoscine hydrobromide injection (crosses the blood-brain barrier, very sedating, should be used with caution) 400 micrograms s.c. PRN 2-4 hourly or via the syringe driver up to the maximum 2400microgramms/24 hours. 15

16 Oxygen Ask Does the patient need oxygen? Measure blood oxygen saturation using a pulse oximeter and consider other ways of managing breathlessness if not hypoxaemic. Do they need a formal assessment by the respiratory team for oxygen? (Consider if CO2 retainers, diagnosis of COPD, oxygen likely to be needed in the long-term). Consider Why is the patient breathless? o Underlying medical problem. o A new medical problem. o Anxiety. Have they tried other methods to control breathing? o Breathing techniques and exercises. o A fan or cool air directed across the face. o Opiates. o Benzodiazepines. Potential risks of using oxygen o Can be dangerous in CO2 retainers. o Fire risk. o Drying of mouth and nasal mucosa. o Prevention of ADLs and social activity by being tied to the tubing. Oxygen is ordered using a HOOF form. Use the within 24 hours section unless it is absolutely necessary to have it within 4 hours. References NICE guidance on COPD issued 2010 (CG 101) Royal College of Physicians guidance on domiciliary oxygen therapy,

17 Anorexia/cachexia These are complex multi-factorial problems related to progressing disease. Once cachexia is established it is difficult to reverse, therefore prevention is better than cure. Anorexia the reduction of appetite for and pleasure in food. Cachexia unintended weight loss of more than 5%. Patients lose lean mass as well as fat, therefore maintaining protein input can be helpful. ANOREXIA Non-drug measures Small meals little and often. Explain the situation to patient and family. Don t underestimate the impact of anorexia and cachexia Concentrate on high-calorie and high protein foods. Treat any correctable factors that may influence intake e.g. o Mouth care. o Vomiting or nausea. o Unpleasant odors. Drug measures Steroids short term benefit only, Dexamethasone 4mg for the first week and decrease to 2mg second week and stop or slowly discontinue. Most of the weight gained is fat and fluid rather than muscle, so the benefit is limited. Progestogens take some time to work, megesterol acetate 160mg 320mg daily. Side-effects include oedema, thrombosis and hypertension. Prokinetics (metoclopramide or domperidone) to help gastric emptying and therefore improve the sensation of early satiety. (Off license use, risk of neurological adverse effects in metoclopramide. Domperidone should be avoided in patients with concomitant cardiac disease or severe hepatic impairment for small increased risk of serious ventricular arrhythmias due to QT interval prolongation). CACHEXIA Once cachexia is established there is little that can be done to reverse it. It is always helpful to explain what is happening to the patient and family, and to set realistic goals. There is useful information from Macmillan although it is written for patients with cancer the principles are the same 17

18 Macmillan primary care 10 top tips for managing anorexia cachexia syndrome: marycare10toptips-anorexia-cachexiasyndrome.pdf Anxiety and depression These are common symptoms in any patient with a chronic disease, and they are often under-identified and under-treated. Although they often co-exist, they should be looked for and treated separately. Severe anxiety and depression can mimic each other and you may need specialist assessment to distinguish the two. Depression can be difficult to diagnose in patients with long-term physical illness, as many of the symptoms are assumed to be due to the physical effects of the illness. As well as using the well-being tool, it can be helpful to focus on the psychological components of depression for example, feelings of helplessness and hopelessness. Patients should be assessed for psychological distress (which may not be a full diagnosis of anxiety or depression) at every consultation, but particularly at key times such as Diagnosis of chronic illness. Change in treatment focus. Exacerbations or deterioration in condition. If a change in residence is needed e.g. moving to residential or nursing care. If imminent dying is diagnosed. In Walsall we use the Well-being Assessment tool. This is attached in Appendix 3. Please note that it is intended as an aid to conversation not as a tick-box exercise. Training in its usage is available through the Practice Development Team. Interventions include 1. Non-drug treatment Psychological intervention in the form of talking therapies can be extremely helpful and can be accessed via psychology services or the GP. 18

19 Patients value having their fears and concerns listened to remember that this is in itself therapeutic and you do not need to be able to fix everything. NICE recommends the use of cognitive behavioral therapies in COPD, but as yet requests to provide staff training have been turned down. 2. Drug treatment SSRIs are licensed for depression and anxiety. Mirtazapine may improve appetite and sleep as well as treating depression. Benzodiazepines can be helpful in advanced disease for managing anxiety associated with breathlessness. 3. Psychological and spiritual support Remember to assess patients for this support at key stages of their illness as detailed above. Your intervention in terms of listening to and validating patients experiences and concerns can be really helpful. Formal support can be accessed via: Psychology. Phone to discuss individual cases and whether referral is appropriate Bereavement support can be provided through the Palliative Care Centre to patients and families before and after death. Referrals should be made on the generic Specialist Palliative Care referral form. GP access to talking therapies might be suitable for those who are mobile and have a slightly longer prognosis. 19

20 Fatigue / Energy Management Identification Patient experiences excessive tiredness which impacts on their daily life. Screen for Referral Intervention First screen for treatable causes such as anaemia, hypothyroidism, depression, anxiety, weight loss, pain, medication side effects, infection, anorexia, malabsorption & other comorbidities Referral Intervention If showing untreatable, resistant or recurrent symptoms, and scoring above 3 on a 1-10 scale, (0 being no fatigue, 10 being worst possible) refer for specialist review management. Those scoring 3 or below should receive written information only but be reassessed as required Specialist assessment Intervention Assess for dimensions of fatigue, such as: - o Fatigue patterns including onset & duration o Sleep o Nutrition o Activities of daily living o Physical and physiological assessment o Current fitness & exercise levels including evidence of decreased activity & physical fitness o Pain o Current disease status o Medication o Mood o Cognition and perception o Relationships o Patient perspective o Vocational life o Family life o Social life o Other relevant symptoms o Other comorbidities 20

21 Refer on as appropriate Consider o Realistic goals with patient o Relaxation & sleep techniques o Energy conservation, pacing & compensatory techniques o Anxiety & stress management o Equipment and environmental adaptation as needed o Enhancing activity o Exercise programme aimed at improving mobility, strength and stamina. Will include cardio-vascular work and muscle strengthening programme o Psychological therapy o Nutritional support and advice o Complementary therapies o Sleep hygiene o Cognitive support o Medical assessment & re-assessment o Consider group or individual setting o Consider vocational rehabilitation o Education/Information for Patients/Carers Provide access to relevant & timely information o Reinforce information about fatigue o Provide written information including exercise programme for home use (language & format) o Provide information on impact of disease & treatment Services for referral: o Occupational Therapy o Physiotherapy o Psychology o Information & Support Service o Complementary Therapy o Dietician 21

22 Pain control 1. Assessment Holistic approach is crucial in assessment of pain. Need to consider Psychological, emotional and spiritual aspects as well as physical. Explore what the pain signifies i.e. the patient may be concerned that the pain represents progression of disease. Pain may be affected by patient s mood. Consider: Physical effects or manifestation Functional impact of pain Psychosocial factors Spiritual aspects Self-assessment should be used whenever possible using visual analogue, numerical or verbal rating scales. Consider type of Pain: Visceral/soft tissue Bone pain Nerve related/neuropathic Incident pain (pain which is well-controlled at rest but brought on by a specific manoeuvre e.g. moving, dressing change) 22

23 2. Treatment Medication By The Clock If pain is continuous use analgesia regularly at appropriate intervals not just PRN. By The Ladder MILD STEP 1 Paracetamol, NSAID +- adjuvants MODERATE STEP 2 Weak opioid+ Paracetamol, NSAID e.g. Co-codamol +-adjuvants SEVERE Step 3 Strong Opioid + Paracetamol, NSAID +- adjuvants Plus Adjuvant Analgesia eg. Anticonvulsant/ Antidepressant By Mouth The oral route is the preferred choice unless there is a clinical reason why absorption may be compromised. If this is the case then contact the SPC team for advice. 23

24 If step 1 or step 2 analgesia is not effective commence a strong opiate usually oral morphine solution 10mg in 5ml at dose of 2.5mg (1.25ml) PRN up to max of 3-4 hourly. Low dose oral morphine can help with pain as well as breathlessness. If more frequent doses are needed or pain is continuous consider conversion to long acting opioid e.g. Zomorph or Oxycontin. Contact the Specialist Palliative care team for advice. Ensure any dose increase is safe for the patient, this is not normally more than 50% of previous dose. Reduce dose/frequency in renal impairment. If the renal function is markedly impaired contact the Specialist Palliative Care team for advice re alternative opioids. For symptom control in last hours/days consider sub cut diamorphine via syringe driver. 3. Specialist rehabilitation intervention in Pain Management Incorporate identification of pain impact on functional performance: self-care, leisure, productivity and maintenance of roles. Occupational Therapist Help with lifestyle adjustment; to include task adaptation, work simplification, compensatory techniques, time management, ergonomic principles and energy conservation Advise on posture, seating and positioning Ensure graded engagement in meaningful activity using goal setting and activity scheduling techniques Provide equipment and adaptations Physiotherapist Teach therapeutic exercise Provide postural re-education Massage and mobilise soft-tissue Provide Transcutaneous Electrical Nerve Stimulation (TENS) Use heat and cold to help ease pain Help with positioning Provide use of orthoses and where provision not possible, create onward referral to orthotics. 24

25 Nausea and vomiting Ask What is the cause of the symptoms? For example, constipation, mouth problems, gastritis, delayed gastric emptying (due to diabetes or opiates), drugs, electrolyte disturbances. Consider 1. Non-pharmacological measures: Change the food that is being offered. Stop offending drugs. Correct electrolyte disturbances. 2. If drugs are needed, choose one of the following as first line: Haloperidol mg OD-BD orally or subcutaneous. Can be used in a syringe driver Best for nausea caused by biochemical causes e.g. opiates or uraemia. CAUTION can cause extra-pyramidal side-effects. Metoclopramide 10mg tds orally or subcutaneous is the starting dose. Can be used in a syringe driver. Prokinetic. Best for situations where you need to improve gastric emptying and increase intestinal transit. CAUTION - risk of neurological adverse effects. Domperidone 10 mg TDS. Prokinetic. Best for situations where you need to improve gastric emptying and increase intestinal transit. CAUTION- avoid in concomitant cardiac diseases or severe hepatic impairment for small increased risk of serious ventricular arrhythmias due to QT interval prolongation. Cyclizine 50mg tds orally or 150mg per day subcutaneously via a syringe driver. Can be irritant subcutaneously. CAUTION- do NOT use with metoclopramide. Avoid in concomitant heart failure. 3. If nausea persists Review the potential causes. Consider Levomepromazine as a second-line drug. 25

26 6.25mg-12.5 mg orally daily or 6.25 mg s.c. PRN up to 25 mg/24 hours or administered via syringe driver. Usual dose 6.25 mg mg over 24 hours. Contact the specialist palliative care team for advice if the above measures are not working. GOOD PRACTICE POINT Remember that absorption is often impaired in patients with nausea and you may need a day or two of subcutaneous administration to get the symptom under control. 26

27 Constipation May be worsened by reduce intake of fluids and food, reduced mobility, side effects of some drugs (opioids, anticholinergics) or comorbidity. Laxatives should be prescribed on a regular basis as soon as opioids are started. 1. Faecal softeners Oral preparations Docusate sodium Onset of action 1 3 days Starting dose Up to 500mg in divided doses Formulations Capsules 100mg. Avoid liquid due to unpleasant taste. 2. Osmotic agents. Increase the amount of water in the large bowel Macrogol preparations may be preferable to lactulose. Onset of action 1 2 days. Starting dose 1 sachet dissolved in 125ml water, usual dose 1-3 sachet daily in divided doses. Faecal impaction: up to 8 sachets a day may be used. Formulations: Movicol, Laxido, Movicol-Half Lactulose should not be used in patients with inadequate fluid intake. Lactulose can cause flatulence, abdominal bloating and cramps. Some patients dislike the sweet taste. Onset of action 1 2 days Starting dose 15ml BD Formulations: Solution Lactulose g in 5ml Magnesium hydroxide liquid Onset of action 3 6 hours Starting dose 10-20ml OD Formulations: Magnesium hydroxide mixture BP. 27

28 3. Stimulant laxatives. Increase the intestinal motility Senna Onset of action 6 12 hours Starting dose 7.5mg OD or BD Formulations: Tablets 7.5mg, Syrup 7.5mg /5ml, Granules 15mg /5ml Bisacodyl Onset of action hours. Starting dose 1 2 tablets nocte. Formulations: Tablets 5mg. Sodium picosulphate Onset of action 6 14 hours. Starting dose 5 to10mg nocte. Potent stimulant indicated only where other stimulant laxatives have failed. Formulations: Capsules 2.5mg, Elixir 5mg/5ml. 4. Combination of softener and stimulant laxative Dantron stains urine red (warn patient) and can also cause perianal skin irritation, especially in incontinent patients. It should be avoided in patients who are faecally incontinent or have a colostomy. The use is licenced only in terminal illness due to risk of development of cancer if used long-term. Co-danthrusate (dantron 50mg, docusate 60mg) Onset of action 6 12 hours. Starting dose 1 2 capsules at bedtime. Avoid suspension for unpleasant taste. Formulations: Capsules 50/60. Co danthramer (dantron 25mg, poloxamer mg) Onset of action 6 12 hours. Starting dose 2 capsules or 10ml at bedtime. Formulations: Capsules 25/200. Suspension 25/200 in 5ml. 5ml suspension = 1 capsule. Co danthramer strong (dantron 37.5mg poloxamer mg) Onset of action 6 12 hours. Starting dose 2 capsules or 5ml suspension at bedtime. 5ml co danthramer strong suspension is equivalent to 15ml co danthramer suspension Formulations: Capsules 37.5/500, Suspension 75/1000 (dantron 75mg, poloxamer mg in 5ml) 5ml strong suspension 2 strong co danthramer capsules. 28

29 1. Stimulants. Local stimulation of intestine. Rectal preparations Bisacodyl suppositories Onset of action minutes Starting dose: 1 suppository Formulations 10mg suppository 2. Softeners Glycerol suppositories Onset of action 1-6 hours Starting dose: 1 suppository Formulations: 4g suppository Arachis oil enema (Do not use in patients with peanut allergy) Usually administered overnight Starting dose 130ml (warm before use) Formulations: Fletchers arachis oil retention enema 3. Osmotic agents. Increase the amount of water in the large bowel. Caution with sodium salts where use may cause sodium and water retention in susceptible individuals. Phosphate enema Onset of action minutes Starting dose 1 enema Formulations Fletchers phosphate enema Sodium citrate enema Onset of action minutes Starting dose 5ml Formulations Micralax (sodium citrate 450mg, sodium For further information see West Midlands Palliative Care guidelines, 2012 and BNF

30 Dry mouth/ Mouth care This common symptom can be exacerbated by oxygen therapy, medication or dehydration. Correct the correctable Treat oral thrush. Review drug regime, consider need to stop or reduce dose of antimuscarinics. Consider: Frequent sips of water (mix carbonated with still water). Mouth care with soft toothbrush. Ice Cubes. Pineapple juice/cubes (contains the enzyme ananase which helps clean the mouth). Stimulation of saliva with use of chewing gum or boiled sweets. Artificial saliva. Mouth care in terminal phase (mouth care frequently with sponge stick or similar, Vaseline to lips, consider room humidifier in dry hot weather). 30

31 The last days of life Dying phase can often be recognised by the following features but is more difficult in patients with end stage respiratory disease than in terminal cancer patients: Sleeping much of the time/unconscious. Little Interest in Food/Fluids. Unable to Swallow Tablets/medication. Largely Bed Bound. Acknowledgement that patient has reached the dying phase should be multi-disciplinary consensus with relatives and patient being part of this process. Patient should have advanced disease and be on maximum therapy, all reversible causes should have been ruled out. As the patient becomes weaker and begins to experience difficulty swallowing, only drugs required for comfort and symptom control should be prescribed. Consider Stopping medication which is no longer appropriate like statins, antihypertensive, levothyroxine or steroids Prescribe pre-emptive symptom control medication and ensure they are available via suitable route e.g. sub cut Breathlessness: unless contraindicated use Diamorphine 2.5mg-5mg s.c. PRN 2-4 hourly if patient is opioid naïve. Seek Specialist Palliative care advice for appropriate dose when patient is already on oral opioids. If breathlessness is associated with anxiety consider Midazolam 2.5 mg-5 mg s.c. 2-4 hourly. In frail and elderly patients the starting dose of Diamorphine and Midazolam may be as low as 1.25 mg. If effective and few PRN doses are required consider starting syringe driver with Diamorphine +- Midazolam. Pain- opioids: unless contraindicated use Diamorphine mg s.c. PRN 2-4 hourly. Consider commencing the syringe driver if 2 or more PRN doses are needed. Sickness- Levomepromazine, usual dose 6.25 mg s.c. PRN 4 hourly, or via syringe driver, maximum dose 25mg/24 hours. 31

32 Agitation/Anxiety/Respiratory distress - Midazolam, usual dose mg s.c. 2-4 hourly. Consider commencing the syringe driver if 2 or more PRN doses are needed Respiratory secretion- Hyoscine Butylbromide, usual dose 20 mg s.c. PRN 2-4 hourly or via syringe driver, maximum 120 mg/24 hours. Another option is Glycopyrronium bromide 200 mcg s.c. 2-4 hourly or mcg via syringe driver. Maximal dose is 1200 mcg/24 hours. Essential drugs which cannot be given by usual route should be changed to appropriate route/form e.g. anticonvulsants converted to sub cut midazolam. Inappropriate invasive procedures e.g. venepuncture, observations etc. should be discontinued. Respiratory secretions can be managed with Hyoscine Butylbromide and careful positioning of the patient. Psychological Support and Communication Skills You will need a clear but sensitive discussion with the family about what is happening and what to expect regarding possible symptoms as the patient approaches death. Explore patients and families anxieties. The family may want to talk to you about what to do when the patient dies (e.g. calling an undertaker, verifying death, laying out the body) Consider completing Life Booklet What to do after a death booklet Wherever possible this care should be carried out in the setting of patients choice in line with preferred priorities of care. 32

33 Appendix 1 References: 1. Idiopathic pulmonary fibrosis, NICE guideline June West Midlands Palliative Care guidelines, Quality standard QS10 COPD pathway July NICE Clinical Knowledge summaries, COPD, November Nice guidelines for COPD, June End of life care strategy BNF Ekstrom MP et al. Safety of benzodiazepines and opioids in very severe respiratory disease: national prospective study. BMJ 2014; 348:g Johnson MJ et al. Opioids for chronic refractory breathlessness: patient predictors of beneficial response. European Respiratory Journal September 1, volume 42(3): Mahler DA. Opioids for Refractory Dyspnea CME Medscape International medicine. CME Released 04/02/ Carlucci A et al. Palliative care in COPD patients: is it only an end-of-life issue? European Respiratory Review, December 1, 2012, vol. 21, no 126, Simon ST Simon et al. Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults 2011 The Cochrane Collaboration. 13. Basil Varkey. Opioids for Palliation of Refractory Dyspnea in Chronic Obstructive Pulmonary Disease Patients. Current Opinion in Pulmonary Medicine. 2010; 16(2): Medscape International Medicine 14. Isaac M et al. Improving quality of life for patients with terminal respiratory disease. Expert Review Respiratory Medicine Dec; 3(6):

34 15. Rocker G et al. Palliation of dyspnoea in advanced COPD: revisiting a role for opioids. Thorax Oct; 64(10): Curtis JR. Palliative and end-of-life care for patients with severe COPD. European Respiratory Journal Sep; 32(3): Epub 2007 Nov Lanken PN et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. American Journal of Respiratory and Critical Care Medicine. Volume 177. No 8. April 15, pp: Dean MM. End-of-life care for COPD patients. Primary Care Respiratory Journal March; 17(1): Anna Spathis and Sara Booth. End of life care in chronic obstructive pulmonary disease: in search of a good death. International Journal of Chronic Obstructive Pulmonary Disease March; 3(1): Published online 2008 March. 20. Denise Williams, Linda Johns. Best practice: End-stage non-malignant lung disease guidelines. Nursing Times Net. 21 January, Solano JP et al. A Comparison of Symptom Prevalence in Far Advanced Cancer, AIDS, Herat Disease, Chronic Obstructive Pulmonary Disease and Renal Disease. Journal of Pain and Symptom Management. Vol 31 No.1 January Amy P Abernethy et al. Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ September 6; 327(7414): Jennings AL et al. A systematic review of the use of opioids in the management of dyspnoea. Thorax 2002; 57: Royal College of Physicians guidance on domiciliary oxygen therapy,

35 Appendix 2 Borg Scale 35

36 Appendix 3 36

37 37

38 Acknowledgements To the authors: Lesley Birch, Community Palliative Care Nurse Specialist, Walsall Healthcare NHS Trust Nikki Humphrey, COPD Lead Nurse, Walsall Healthcare NHS Trust Dr Radka Klezlova, Consultant in Palliative Medicine, Walsall Palliative Care Centre, Walsall Healthcare NHS Trust Dr Shahid Nadeem, Consultant Respiratory Physician, Walsall Healthcare NHS Trust Dr Esther Waterhouse, Consultant in Palliative Medicine, Walsall Manor Hospital, Walsall Healthcare NHS Trust Kerrie Phipps, Clinical Lead, Specialist Community Palliative Care Therapies Team, Walsall Healthcare NHS Trust To other contributors: Claire Chester Community Matron, Walsall Cath Easthope, Respiratory Nurse Specialist, Walsall Healthcare NHS Trust Dr Su Nambisan Lead GP for Cancer and End of Life Care, Walsall Richard McShea -Principal Therapist, Walsall Healthcare NHS Trust Dawn Rhind-Tutt Clerical Officer, Walsall Healthcare NHS Trust 38