Palliative care for patients with Multiple Sclerosis Dr Laura McTague Consultant in Palliative Medicine, St Luke’s Hospice Dr Eleanor Smith Consultant in Palliative Medicine, Sheffield Teaching Hospitals
Overview • Holistic assessment and symptom control, including – Pain – Spasticity – Breathlessness – Choking/Aspiration • How to manage subcutaneous medication • Case history with group work • Advance care and emergency care planning
Relationship between Specialist Palliative Care (SPC) and End of Life Care
Holistic assessment • Symptoms: – Pain – Shortness of breath – Other physical – Emotional and psychological – Social • IPOS • POS MS • Neuropathic pain scale e.g. LANSS
Pain • Assessment: OPQRST/SOCRATES, over time and with specialist PROMs to engage patients , families and carers • MS: complex, severe, multi modal – Types of pain • Incident/breakthrough pain: Lhermittes/shooting/stabbing pain • Neuropathic pain: trigeminal neuralgia, sensory changes • Spasm • spasticity – Delivery of drugs • Transdermal • PEG • Nasal/buccal – Combinations of drugs
Opioids Antidepressants Antiepileptics
Opioids: evidence of efficacy, but how effective? • Can be reduced sensitivity to opioid receptors (mu, delta, kappa) • Genetic variations in receptor sensitivity, loss of opioid receptors on pre-synaptic terminals • Current best evidence for morphine, oxycodone and tramadol • Morphine in one study as good as pain relief as gabapentin • Oxycodone RCTs NNT 2.5, no effect on mood • Tramadol RCTs reasonable , NNT 3.5 • Methadone, best evidence relating to opioid switch for allodynia, myoclonus etc
Tricyclic antidepressants • Non-linear pharmacokinetics • Amitryptilline 10mg starting dose to 75mg • Nortriptilline may produce less side effects, if analgesia achieved , but limited by SEs • Multi-modal activity – Inhibit serotonin and noradrenaline uptake – Interact with sodium and calcium channels – Block histamine and muscarinic receptors
Non-TCA, SNRI Antidepressant: Mirtazapine • Therapeutic with initial dose • Pain control • Sleep, anxiety and appetite improvement • Fewer drug interactions • No QT c effects, hypertension • Anti-emetic • Tolerance to sedation
Anti-epileptics • Oral or parenteral • Phenytoin/carbamazepine block sodium channels • Carbamazepine also has actions at serotinergic pathways • Gabapentin, pregabalin, Lamotrigine, act on various receptors, calcium channels and GABA • Side effects same for all – Drowsiness – Fatigue – Ataxia – dizziness
Spasticity • Medications: • Non drug: • Spinal/supraspinal CNS action Physical therapy – Baclofen (po and csci) – Massage – Diazepam (tolerance) – Heat – Tizanidine – Relaxation therapy Clonazepam (po and csci) – – • Muscle action Acupuncture – Dantrolene – Quinine – • IT baclofen • Botulinum toxin • Antiepileptics Gabapentin – Carbamazepine – Phenytoin –
Cannabinoids Analgesic effect is moderate: THC • 2 receptors:CB1 and CB2 • Sativex: combination of THC with CBD, oromucosal spray, mixed results from RCTs • Refractory spasticity: mixed results, start with 1 spray at night • Schedule 4 drug etc
Breathlessness Non-pharmacological interventions for breathlessness in advanced stages of malignant and non-malignant diseases • Demonstrated efficacy for: – Neuro-electrical muscle stimulation – Chest wall vibration – Walking aids – Breathing training – Hand-held fans Non-pharmacological interventions for breathlessness in advanced stages of malignant and non-malignant diseases. Cochrane 2008
How do opioids work? • Via their μ-opioid receptor activity • Central effect – modulation of breathlessness • Peripheral effect – bind to opioid receptors within bronchioles and alveolar walls • Decrease higher cortical awareness of dyspnoea and response to hypoxia and hypercapnia Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane 2016
Choking/aspiration • Reversible conditions: call for help, follow advice • Emergency care plan/palliative emergency care plan ( for care at home only) – Immediate response – Clear roles and responsibilities for family/carers/DNs and GP/ urgent and Emergency care practitioners – Medications: buccal/subcutaneous Midazolam and opioid with clear instructions to administer, including indications
Subcutaneous medication Other medications available sc: Pre emptive prescribing: • Instruction to administer and kit • Other opioids: Methadone, oxycodone • Morphine/diamorphine • Midazolam • Other adjuvants: ketamine, ketorolac, etoricoxib • Buscopan • Haloperidol • Other anxiolytics: Clonazepam • Spasticity: Baclofen Syringe drivers: • Other symptoms: Ranitidine, • Continuous infusion over 24h Octreotide, glycopyrolate, hysocine hydrobromide, • Is a route of drug delivery, not a ceftriazxome prognostic sign!
Sub-cutaneous injection, mode of action • Some medications are best absorbed by the fatty layer under the skin. • SC medications are absorbed more slowly than IM or IV, but still enter the circulation and receptors quickly to relieve symptoms and negate the need to venous access. • Particularly useful at the end of life when patients may have reduced body mass and inaccessible veins.
Advance care planning
Aims • Describe relevance of advance care planning (ACP) in clinical practice • Understand what is meant by the term ‘advance care plan’ • Recognise factors that preclude the use of ACP in day-to- day practice • Reference guidance with regards to initiating conversations about dying.
What is advance care planning? Prognostic uncertainty recognised Conversations about future care and treatment options Opportunity to explore and record an individual’s preferences and priorities in advance Communicate care plan - aim to improve coordination of care at the end of life 4
A discussion on ACP should include • their understanding about their illness and prognosis • the individual’s concerns/”fears” and wishes • their important values or personal goals for care • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these “Trade offs”
Advance Care Planning • Discussion with patients and those important to them about their wishes and thoughts for the future • Deliver care to meet needs • Help them live and die in the place and the manner of their choosing • Make decisions in case they lose capacity
Formal Advance Care Planning 1. Advance Statement of wishes (not legally binding) 2. Advance Decision to Refuse Treatment 3. Lasting Power of Attorney for Health and Welfare 4. LOTA/Emergency care plans, DNACPR or ReSPECT
ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) Incorporates patient preferences and clinical judgement
Why does ACP matter? For patients and families • Symptom management • Choice & control • Being treated as an individual and ensure dignity • Quality of life • Preparation – practical & personal • Carers support • Co-ordination and continuity For health care professionals…. Aspinal et al 2006
Barriers (RCP) Public • Culture Professionals Healthcare management All staff • Confidence Lack of role models Prognostic uncertainty Whose responsibility? • Practicalities Documentation/Communication Space, time, differing beliefs by patients
Top tips • Patient led – look for verbal/ non-verbal cues • Process over time, not a checklist • Environment should be appropriate • Tone and content: truthful, respectful, compassionate, clear • Document wishes where appropriate • Plan for review (not legally binding).
Communicating Advance Care Planning Information • Ideally patient needs a copy of their ACP • Relevant people need to be aware of the information • Hospital teams can help by – Ensuring information on TTO – Informing GP specifically
ACP at Sheffield Teaching Hospitals • Project to improve communication across the interface; complement existing systems. • Documentation to facilitate discussion, IT (Lorenzo) solutions. • Working with Geriatricians, Palliative Care, care home liaison nurses, CCG, Service Improvement. • Potential use in other areas if successful (tests for change).
Summary • Advance care planning: – is relevant in virtually all specialties – Provides positive opportunity for both clinicians and patients. • Barriers exist; the challenge is of overcoming these. • Guidance with regards to initiating conversations about dying.
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