Palliative care for patients with Multiple Sclerosis Dr Laura - - PowerPoint PPT Presentation

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:
• Spinal/supraspinal CNS action

– Baclofen (po and csci) – Diazepam (tolerance) – Tizanidine – Clonazepam (po and csci)

• Muscle action

– Dantrolene – Quinine

• IT baclofen
• Botulinum toxin
• Antiepileptics

– Gabapentin – Carbamazepine – Phenytoin

• Non drug:

– Physical therapy – Massage – Heat – Relaxation therapy – Acupuncture

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

Pre emptive prescribing:

• Instruction to administer and kit
• Morphine/diamorphine
• Midazolam
• Buscopan
• Haloperidol

Syringe drivers:

• Continuous infusion over 24h
• Is a route of drug delivery, not a

prognostic sign!

Other medications available sc:

• Other opioids: Methadone,
• xycodone
• Other adjuvants: ketamine,

ketorolac, etoricoxib

• Other anxiolytics: Clonazepam
• Spasticity: Baclofen
• Other symptoms: Ranitidine,

Octreotide, glycopyrolate, hysocine hydrobromide, ceftriazxome

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

• f care at the end of life4

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)

• Culture
• Confidence
• Practicalities

Professionals Public Healthcare management Lack of role models All staff Prognostic uncertainty Documentation/Communication Whose responsibility? 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.

Recommended reading/ listening

Case study

‘Why can’t I stay here/ I don’t want to stay here!’

• A 42 year old man with MS, lives alone, PEG for all meds and feeds, four times a day care

and nights – Unable to call for help himself: completely dependant on others for all ADLs – Five 999 admissions via ED in 6 months, with aspiration pneumonia/pressure sores….

• Chest physician : “ stop sending this man in!...I don’t care if he is choosing to come in…!”
• DN team: “ he keeps on eating food he shouldn’t…and aspirating…he won’t listen to us”
• Care agency: “he keeps choking… he is unconscious now…we can’t ask him what we

should do….”

Why can’t I stay here?..... I don’t want to stay here Chest physician

• ‘Stop sending this man in….I don’t care if he is choosing

to come in’ Background

• 5 emergency admissions in last 6 months, keeps coming
• back. This will keep happening

Why can’t I stay here?..... I don’t want to stay here DN team

• He keeps on eating food he shouldn’t and aspirating
• “He won’t listen to us”

Background

• Numerous episodes of aspiration pneumonia
• What can we do differently?

Why can’t I stay here?..... I don’t want to stay here Care agency

• He keeps choking
• He is now unconscious

Background

• We can’t ask him what he wants us to do

Consider within groups

• How would you assess this patient?
• What are the issues?
• What other information do you need?
• What is your plan?
• How and where will your plan be delivered?

Making meaningful choices over time

• Assessed capacity, listened to what he wanted to do, discussed choices and helped him

communicate

• He was scared, didn’t think he had choices or control
• Agreed to write these choices down in an Advance decision to refuse Treatment (ADRT)

(witnessed and signed)

• Agreed to discuss more formal Advance Care Planning (ACP):

– Do Not Attempt CPR (DNACPR) and detailed care plan including Emergency Care Plans (ECPs) for choking/aspiration/treatment of infections at home/not for readmission

• Lasting Power of Attorney (LPOA) not wanted as NOK elderly mother in Ireland…..

Any questions?

Credit: Timeframes in the dying process (‘More Care, Less Pathway’ Neuberger et al. 2013)