Top Tips: patients with Progressive Long Term Neurological Conditions (LTNCs)

Transcription

1 Top Tips: patients with Progressive Long Term Neurological Conditions (LTNCs) Life limiting progressive neurological conditions could include the following: Neurodegenerative; E.g. Motor Neurone Disease (MND), Parkinson s disease (PD) and Friedreich s Ataxia (FA) Neuroinflammatory; e.g. Primary progressive Multiple Sclerosis (MS) Neuromuscular E.g. Duchenne Muscular Dystrophy, Spinal Muscular Atrophy What are the common or significant health and symptom burdens of progressive neurological conditions in patients in the last year, months and days of life? Depending on the type of condition, the following may occur: Pain Nausea and vomiting Breathlessness Drooling Anxiety and depression Cognitive changes Spasticity Increasing disability Swallowing difficulties Communication difficulties Bladder and bowel dysfunction Skin breakdown Things to consider when managing medicines for neurological patients Patients and carers are often experts in disease and medication management 1 Non -pharmacological interventions can be used to control symptoms e.g. botulinum toxin for excessive drooling or spasticity, psychological support for anxiety or depression, physiotherapy for postural control and repositioning An Advanced Decision to Refuse Treatment (ADRT) or advance statements may exist that are relevant to medicines management Many patients are maintained on finely tuned management routines, e.g. bowel/bladder, spasticity, which if disturbed may lead to increased morbidity and distress, and may take weeks to re-establish 1 You may need to liaise with their neurology nurse or consultant for specialist advice when making changes The oral route for administering medication may be lost prior to the terminal phase- consider early if gastrostomy is appropriate Parkinson s Disease (PD) Given the complexity of drug therapy in PD, specific drug therapy is not outlined here but this guidance signposts you to a summary document on drug therapy published by PD UK if you need further information 29

2 Treatment for cramps: Quinine sulphate Types of Medications Commonly Used in Progressive LTNCs: (adapted from Radanovic et al 2007) 2 Relief of cramp Tablet burden or time taken to put through gastrostomy Toxic in over-dosage with risk or accidental fatalities Physiotherapy Physical exercise Massage Hydrotherapy Spasticity: Baclofen Tizanidine Dantrolene Memantine Cannabis extract (MS only) Reduction in spasticity May help pain if related to spasticity May make passive movement easier Reduction in tone leading to increased disability Sedation GI disturbance Dry mouth Mood disturbance Physiotherapy Hydrotherapy Cryotherapy Hepatotoxicity (Dantrolene and Tizanidine) May effect ability to drive Needs careful withdrawal of Tizanidine due to potential rebound hypertension and tachycardia Excessive watery saliva: (drugs with antimuscarinic effects) Atropine Hyoscine hydrobromide Hyoscine butylbromide Hyoscine Scopoderm Glycopyrronium Amitriptyline Reduction in excess saliva Overly dry mouth Any tenacious secretions may become more tenacious if also problematic Other anti-muscarinic effects; Blurred vision Cardiovascular- tachycardia, arrhythmias Urinary retention Home suction device Dark grape juice Sugar-free citrus lozenges Nebulization Steam inhalation Botox injections into parotid glands Irradiation of the salivary glands 30

3 Tenacious saliva and bronchial secretions: Carbocisteine Thinning of tenacious secretions making it easier to suction or for patient to selfclear Patient gets thinner secretions that they are still unable to clear-choking sensation Risk of peptic irritation and GI bleed Home suction device Assisted cough insufflator-exsufflator Rehydration (jelly/ice) Reduce use of dairy products/alcohol/caffeine Butter Pain: Paracetamol NSAIDs Opioids Neuropathic agents E.g. anti-epileptics Relieve pain (which may improve other factors such as functional ability and mood ) NSAIDs- renal toxicity and risk of CVA and MI long-term, check renal function regularly Opioids: Common initial- nausea and vomiting, drowsiness Common on-going - constipation, dry mouth, nausea and vomiting Less common Neurotoxicity-e.g. myoclonus, hallucinations Urinary retention Rare respiratory depression Positioning Complementary therapy Anticipate side effects such as constipation and nausea and prescribe necessary medications to prevent or treat Anti-epileptics- some drugs such as phenytoin need plasma levels and monitoring of other parameters check individual drug Drugs such as pregabalin and gabapentin can have similar side effects to opioids 31

4 Constipation Laxatives : Bulk-forming Isphagula husk (e.g. fybogel) Softeners: Docusate Sodium Liquid paraffin Stimulants: Senna Osmotic: Lactulose Movicol Reduce painful or distressing constipation Over-laxation leading to diarrhoea or faecal incontinence Cramps (especially stimulants) Flatulence Isphagula- need adequate fluid intake or risk of obstruction Hydration Increased fibre intake Urinary urgency/frequency Antimuscarinics e.g. tolteridine, oxybutinin Reduce symptoms of urgency and incontinence See Excessive watery saliva: section Review fluid intake Bladder retraining Pelvic floor exercises Botulinum toxin Nausea and vomiting Antihistamines e.g. Cyclizing Phenothiazines e.g. prochlorperazine Levomepromazine Prokinetic: Metoclopramide (D2 antagonist, 5HT4 agonist) Domperidone (D2 antagonist) Reduce nausea and vomiting Check individual drugs: Risk of parkinsonism and dyskinesias-in PD use Domperidone as does not cross blood brain barrier but risk of gynaecomastia Lowering of seizure threshold 32

5 Depression Tricyclic antidepressants Selective Serotonin reuptake inhibitors (SSRIs)- e.g. citalopram, fluoxetine Serotonin noradrenaline reuptake inhibitor (SNRIs)- duloxetine, mirtazepin Improve or stabilise mood TCAs- see notes on amitriptyline above SSRIs- withdrawal reactions if stopped, can be sedating but less so than TCAs, nausea and vomiting, risk of suicidal behaviour SNRIs- as SSRIs, weight gain can occur with some Psychological support Counselling Insomnia: Tricyclic antidepressants e.g. amitriptyline Improve sleep As previously outlined in table Comfort Sleep hygiene Benzodiazepines e.g. Lorazepam, midazolam Sedation Occasionally paradoxical worsening of anxiety Anxiety: Benzodiazepines Improve anxiety e.g. anxiety related to breathlessness See insomnia section above Psychological support Counselling Breathlessness Opioids e.g. morphine to reduce perception of SOB Benzodiazepines-(e.g. Lorazepam, midazolam)indicated for any anxiety associated with SOB Improve sensation of breathlessness See insomnia section above for benzodiazepines See pain section for opioids Breathing techniques Physio Psychological support Complementary therapies 33

6 Review of medications as illness progresses Think ahead. Loss of oral route If loss of oral route is anticipated long term feeding options need to be consider early, before the oral route is lost. All the groups of medication listed may prove useful even fairly late on in disease, to achieve good symptom control. A speech and language therapist may have advice about how to preserve oral route for as long as possible and which formulations are most useful. If converting medication from oral route to gastrostomy route, take care that drug can safely go down the gastrostomy without causing blockage or damage of gastrostomy tube or drug/drug interactions in the gastrostomy tube Subcutaneous medication or transdermal medication may be useful if the oral route is lost and there is no gastrostomy in situ (refer to last hours of life). Examples include: transdermal opioids for pain relief- fentanyl, buprenorphine use of rotigotine patch (dopamine agonist) in Parkinson s Disease For guidance in the terminal phase see section 10 of these guidelines Key messages Symptom control in patients with LTNCs is often multifactorial and complex- medication changes need to be made in this context, involving the patient and carers where possible, seeking specialist advice when necessary. Think ahead if you are aware the oral route may be lost as result of the condition Key references 1. Royal College of Physicians Consensus Guidance to Good Practice Long- term Neurological Conditions: Management at the Interface Between Neurology, Rehabilitation and Palliative Care London Radunovic A, Mitsumoto H, Leigh PN. Clinical care of patients with amyotrophic lateral sclerosis. Lancet Neurology 2007;6: Useful resources 26HandbkOfDrugAdminiViaEnteralFeedingTubes%201stEd_WhiteAndBradn.pdf Handbook of Drug Administration via Enteral Feeding Tubes Bradman V, White R Pharmaceutical Press 2007 Date accessed Drug treatment for Parkinson s August 2012 Parkinson s UK Date accessed: