End of life care: What problems will we meet in neurological patients? Dr Eli Silber Consultant Neurologist Kings College Hospital

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1 End of life care: What problems will we meet in neurological patients? Dr Eli Silber Consultant Neurologist Kings College Hospital

2 Outline How do neurologists work? Which neurological conditions may require palliative care? Neurological nursing What can specialist palliative care provide? MS as model

3 What do neurologists do? Neurological problems are common 20% of GP consultations Most are managed by non-neurologists Pharmacy / GP General Medics / Geriatricians (Stroke / Parkinson s) Despite seeing a minority of patients we have an important role Difficult / complicated cases Teaching

4 Neuro ward Admitted to hospital See a neurologist See a doctor Neurological problems

5 Mental health and neurology Chicken or egg Is the problem a result of the disease or the disability Freud started off as a Neurologist! Medically unexplained symptomsv.s mental health problems as a component of the disease.

6 What does my clinical job consist of? Outpatient neurology Kissing frogs - the worried well Many unpleasant but not dangerous In the head thus anxious 18 weeks Inpatient neurology Complicated diagnosis Some treatable Consultation service Chronic disease management Prevent disability Manage complications Team

7 Our roles: Where do we fit in? Relapse management Diagnosis Underlying problems Disease types Current problems Attempt to prevent disability DMTs Rehabilitation Symptom control/ palliation Physical Mental health

8 Patterns of neurological conditions 1 Cerebral palsy Polio Early insult-relatively static Late insult with / without recovery Head injury Stroke

9 Patterns of neurological conditions 2 Relapsing with / without later progression Epilepsy MS Psychiatric conditions Progressive Progressive MS MND Parkinson's MSA / PSP Alzheimer's

10 Neurological conditions are complex Neurophobia amongst many doctors Limitations in medical training Many diagnoses, types Complex conditions Mental health Cognitive Physical Autonomic

11 Neurological conditions are complex For many no definitive test Rely on clinical signs and good judgment For some medication may control but balancing side effects The cure may be worse than the disease Prognosis variable Functional localisation

12 Neurological diseases Diagnosis Complex problems Treatment Prognosis Palliative care needs

13 Tumours

14 Tumours Diagnosis Relatively easy, can biopsy, exclude metastases/ non-malignant Complex problems Yes, raised intracranial pressure adds! Treatment Surgery, radiotherapy, steroids Prognosis Occasionally cure with surgery, often prolong Palliative needs

15 Tremor Rigidity Parkinson s Disease Bradykinesia Loss of postural reflexes Non-motor manifestations Autonomic dysfunction Cognitive, hallucinations : Lewy Body Dementia Mood, behaviour

16 Parkinson s Disease Diagnosis Relatively easy if typical but many mimics, DAT scan Complex problems Especially with advanced disease, non-motor manifestations Treatment Medication, Surgery, some symptoms poorly responsive Prognosis Long die with Palliative needs Some

17 Parkinsonian Syndromes Progressive supranuclear palsy Parkinsonian- axial Postural reflexes Eye movements Multisystem Atrophy Autonomic Pyramidal- weak/ reflexes Cerebellar

18 Parkinsonian Syndromes Diagnosis More difficult, DAT scan Complex problems Yes, from early, cognitive, autonomic Treatment Poor response to medications usually Prognosis Less good, 5 years? Palliative needs Early

19 Multiple sclerosis Inflammation and demyelination in the central nervous system Many will develop progressive disease, 50% require assistance with gait at years

20 Diagnosis Multiple sclerosis Usually easy, especially once advanced Complex problems Yes, motor, sensory, pain, cognitive, mood, sphincters, fatigue Treatment Disease modifying therapies prevent relapses, little for more advanced disease, symptomatic Prognosis Usually good, long life span Palliative needs Seldom, late

21 Comparison of MS with other advanced diseases Symptom MS 1 Cancer 2 Heart disease 2 Respiratory disease 2 Pain 68% 35-96% 41-77% 34-77% Fatigue 80% 32-90% 69-82% 68-80% Nausea 26% 6-68% 17-48%? Constipation 47% 23-65% 38-42% 27-44% Breathlessness 26% 10-70% 60-88% 90-95% 1 King s study - % with symptom 2 Solano, Gomes, Higginson. Journal of Pain and Symptom Management, 2006: 31:58-69.

22 Motor neurone disease Degeneration of motor nerve cells in the brain and spinal cord Progressive weakness and wasting Limbs and bulbar muscles

23 Motor neurone disease Diagnosis Usually easy, especially once advanced Complex problems Yes, motor, speech, swallowing Treatment Limited adds months Prognosis Usually poor, especially if older, bulbar onset Palliative needs Early, inevitable

24 Huntington s Disease Genetic- autosomal dominant Late onset Dementia Chorea

25 Others Cerebellar degenerations Other inherited conditions Muscle and peripheral nerve diseases Complications of infections, including HIV Trauma

26 Dementias The big ones Alzheimer's affects 1/14 >65 years and 1/6 >80 years Usually idiopathic Long duration, late diagnosis, limited role for meds Stroke Third largest cause of death in the UK ¼ strokes under age 65

27 Caring for people with advanced disease Hospital Community Neurology Rehabilitation Palliative Care

28 Doctors GP Neurologist Rehab Psychiatrist Nurses Ward / MS Continence District The MS Team Patient Family Extended family / friends Support organisations Work Therapy Physio, OT Speech / wheelchair Social services/ professional carers

29 Neurology Diagnosis Investigation Disease modification Rapidly progressive Conditions Active disease management Preventing long-term complications Symptom control Rehabilitation Physical management Cognitive/communication deficits Profound brain injury Neuro-palliative Rehabilitation Palliative care End of life care Dealing with loss Spiritual support

30 Autonomic Bladder, bowels, sex, postural hypotension arrythmias Bulbar Speech, communication, swallow, aspiration, nutrition Common issues Motor Upper limbs Lower limbs Spasticity/ rigidity Falls Mood and Cognition Insight, communication Depression Pain and sensory symptoms

31 What is good about nurses? Numbers Lots! Widespread Skills Can learn anything Breadth or depth Flexibility Work patterns Hospital and community Skill sets

32 Which nurses? Specialist neurology nurses Hospital or community based Wealth of experience case load Link to consultant / specialist services Other specialities e.g. continence Community matron Community based / link to community teams / GPs Smaller case load complex cases Hospital nurses

33 Models of working Neurology nurse: Diagnosis, review, crisis management, progression Palliative care: intense over shorter time with bereavement

34 We reviewed neurologists, rehabilitation specialists and palliative care consultants about their service. Core elements of your service 100% 80% 60% 40% 20% % neuro %PC %rehab 0% Ax/diagnosis Disease control Symptoms Therapy Aids/equipment Co-ordination Social/Psych Spiritual Death Bereavement

35 End of life support Provided by: 100% palliative physicians 73% neurologists 53% occasionally, 20% often. 60% of rehabilitation physicians 47% occasionally, 13% often.

36 Care for sudden-onset conditions Neurology 65% Rehabilitation 89% Palliative medicine 17% Care for intermittent conditions Neurology 90% Rehabilitation 72% Palliative medicine 19% Care for progressive conditions Neurology 93% Rehabilitation 79% Palliative medicine 63%

37 Research Question: Can the needs of people severely affected by MS be met by a Palliative Care Service? 3 year research project funded by MS Society: Service modelling study Development of a new clinical service Evaluation of the service

38 Key Issues Arising From Patient Loss and change Interviews Support needs: emotional and practical Information needs: services, aids and adaptations, benefits, end-of-life planning Symptom control Care issues: co-ordination, continuity, inpatient care

39 This led to Service Development Clinical Service Improving gaps in continuity of care & communication Symptom control Complex psychosocial support End of life care planning Information Mapping existing services Education Information exchange between professional groups

40 Palliative Care Service for PwMS Psychosocial worker Palliative care consultant Palliative care nurse Service co-ordinator

41 Reasons for referral Symptom management Psychosocial needs Competence and consent Hydration and nutrition Advance directives/ end of life decisions

42 PwMS included Patients 69 In study 52 Indicates point of clinical intervention FI I1 SI I1 Not in study Taken off study 17 FI I2 26 SI I (1 Protocol violation 1 PwMS died) FI I3 SI I3 Taken off study Taken off study 1 (1 PwMS died) FI I4 25 SI I (2 PwMS died) Taken off study 25 pre study as well! SI I (1 PwMS became severely ill)

43 Differences at 4-6 weeks PwMS in FI group had small but significant improvement in nausea compared to SI group (p=0.039) PwMS in FI group more likely to have seen a paid carer more recently than in SI group (p=0.018) Lower costs

44 What does palliative care do well? Sees someone more quickly Cover hospital, home, community Nursing teams, hospices Not limited by waiting lists, huge clinics.i.e. can devote more time to specific patients Not scared of death, families, distress Experience with opioids, end of life issues

45 How did my patients benefit? We identified a neglected group with specific and complicated needs Symptom control. There are areas we can do better: Pain, nausea, constipation Care coordination Holistic care Death and dying (we are scared of this) Autonomy / Existential issues Family carer needs

46 If palliative care takes on neurology patients we may need new models of working With existing teams One off and intermittent care rather than ongoing care More knowledge and experience in neurology Is palliative care willing, interested and capable of taking on neurology?

47 Palliative Care Service: Lessons Need to integrate with local services (Neurology and rehabilitation) Short term interventions by specialist palliative care may help with specific issues but does not replace key role of team Need for more integration and liaison between pall care and neurology services to promote appropriate care for those that are severely affected Only a minority of patients seen by palliative care service identified as having ongoing specialist palliative care needs

48 Who to refer? Need Symptoms Psychosocial support Advanced directives Care coordination (statement of needs) Resources The services that we refer to depend on availability, affability Services provided by different units/ specialities depending on resources and willingness

49 Chronic conditions: Concise Guidance

50 Pain Guidance Spasticity Bowel / bladder Respiratory distress Secretions

51 Swing your legs over the bed What happens when our patients are admitted to acute general wards?

52 Chronic conditions in hospital: Checklist 1 Prior to admission Necessary? Planned? On admission Inform caring team Check medication / equipment Check competence

53 Chronic conditions in hospital: Checklist 2 Review in hospital Posture / spasticity / pressure sores Anticoagulation Bladder / bowels Swallow / nutrition / Respiration Cognition / depression Pain If considering a procedure? Appropriate/ competent Prior to discharge Appropriate for patient / family Inform team/ arrange follow up

54 Life circles : the relationship of neurology, rehabilitation and palliative care for people with long term neurological conditions

55 Life circles : the relationship of neurology, rehabilitation and palliative care for people with long term neurological conditions

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