1. End of life care in Parkinson’s disease
Dr Peter Fletcher
Gloucestershire
NHS
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2. normal ageing normal heterogeneous but can be modified
changes the clinical picture
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3. dopamine levels with age
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4. diseases commoner in older people have: - a rising incidence - a rising prevalence
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5. prevalence of Pd Iceland Aberdeen, UK Carlisle UK Northampton, UK 500
500
1000
1500
2000
2500
0-39
40-49
50-59
60-69
70-79
>80
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6. Click here to continue
ONS, NRS, NISRA Mid-year population estimates 1985, 2010; ONS National Population Projections 2035, 2010-based

7. predisposing factors & Pd
when does
confusion
occur
others
UTI
heart
failure
age
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8. partnerships in Pd geriatrician OT PD Nurse Person with PD Family
The
Cure Parkinson’s
Trust
Physiotherapy
Social Worker OT
psychiatrist
PD Nurse
Person
with PD
Family
Dietician
Friends
Carers
Health Visitor
District Nurse
Psychologist
neurologist GP
SALT
pharmacist
■ Walker & Bowron 2004
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9. key priorities referral, diagnosis and review
people with suspected PD should be referred quickly and untreated to a specialist
diagnosis of PD should be reviewed regularly and reconsidered if atypical clinical features develop
The guideline lists several recommendations that have been identified as priorities for implementation.
KEY PRIORITIES FOR IMPLEMENTATION
People with suspected PD should be referred quickly and untreated to a specialist with expertise in the differential diagnosis of this condition.
The Guideline Development Group considered that people with suspected mild Parkinson’s disease should be seen within 6 weeks; new referrals in later disease with more complex problems require an appointment within 2 weeks.
The diagnosis of PD should be reviewed regularly and reconsidered if atypical clinical features develop.
The Guideline Development Group considered that people diagnosed with PD should be seen at regular intervals of 6–12 months to review their diagnosis.
Acute levodopa and apomorphine challenge tests should not be used in differential diagnosis of parkinsonian syndromes.
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ww.nice.org.uk/nicemedia/live/10984/30087/30087.pdf 5/242

10. Pd & non motor gastro- intestinal problems autonomic disorders sensory
symptoms
of sleep
neuro-
psychiatric
Pd &
non motor
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11. Click here to continue
Movement Disorders:Vol 23, No 6,

12. ?cognitive function? Click here to continue
Movement Disorders:Vol 23, No 6, 12

13. Click here to continue
Movement Disorders:Vol 23, No 6,

14. 10% suddenly - 90% prolonged illness
... how many of us …
… die a sudden death ... ?
10% suddenly - 90% prolonged illness
70% want to die at home; <20% do
1:6 of us in a care home (NCPC 2010)
Pd hugely overrepresented among the latter (Bowman et al 1990)
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15. Kempster PA et al
Brain 2007;130:
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16. Parkinson’s time course
■ MacMahon Fletcher Thomas Lee 2005
Parkinson’s time course
e d u c a t i o n
interprofessional interventions
drug Rx
NMS
diagnosis maintenance complex palliative
advanced directives
advanced care planning
AND etc
feeding – PEGs etc
wearing off
dyskinesia
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17. Palliative care in Parkinson’s disease
… in the absence of any curative treatment the management of Pd remains largely palliative …
… the principles of palliative care should be applied throughout the course of the disease and not limited to the terminal end-of-life period …
The guideline lists several recommendations that have been identified as priorities for implementation.
KEY PRIORITIES FOR IMPLEMENTATION
People with suspected PD should be referred quickly and untreated to a specialist with expertise in the differential diagnosis of this condition.
The Guideline Development Group considered that people with suspected mild Parkinson’s disease should be seen within 6 weeks; new referrals in later disease with more complex problems require an appointment within 2 weeks.
The diagnosis of PD should be reviewed regularly and reconsidered if atypical clinical features develop.
The Guideline Development Group considered that people diagnosed with PD should be seen at regular intervals of 6–12 months to review their diagnosis.
Acute levodopa and apomorphine challenge tests should not be used in differential diagnosis of parkinsonian syndromes.
Click here to continue
ww.nice.org.uk/nicemedia/live/10984/30087/30087.pdf 5/242

18. Palliative care in Parkinson’s disease
Issues:
physical, social, psychological, existential
Pd pallative phase has been defined by:
inability to tolerate dopaminergic medication unsuitability for surgery presence of advanced comorbidity
The guideline lists several recommendations that have been identified as priorities for implementation.
KEY PRIORITIES FOR IMPLEMENTATION
People with suspected PD should be referred quickly and untreated to a specialist with expertise in the differential diagnosis of this condition.
The Guideline Development Group considered that people with suspected mild Parkinson’s disease should be seen within 6 weeks; new referrals in later disease with more complex problems require an appointment within 2 weeks.
The diagnosis of PD should be reviewed regularly and reconsidered if atypical clinical features develop.
The Guideline Development Group considered that people diagnosed with PD should be seen at regular intervals of 6–12 months to review their diagnosis.
Acute levodopa and apomorphine challenge tests should not be used in differential diagnosis of parkinsonian syndromes.
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ww.nice.org.uk/nicemedia/live/10984/30087/30087.pdf

19. Click here to continue
Turner-Stokes et al. Clin Med;7(2)

20. P R I M A Y C E T
PDNS
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21. thinking ahead
education early and ongoing to avoid unrealistic expectations
avoid [motor] disease-centric approach
non medical aspects critical
legal
poor communication by patient
no acute worsening = something else
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22. survival in Pd cannot predict lifespan in Pd patients
can predict disease trajectory if Δ correct
L dopa has increased survival from 7.5 years to >15 years and still increasing
L dopa has halved excess mortality from 3 to 1.5
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Hoehn and Yahr neurology 1967;17: )

23. issues follow up key to understanding trajectory
who does the palliative care in Pd
patient/problem list > disease
conundrums
nutrition
bed bound sores/contractures
care homes
post death support of family and carers
for the family when does the patient die?
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24. approaching death in Pd
pain
drooling
immobility and falls
dysphagia and weight loss
chest/urine infections
exhaustion
frailty
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25. pain rigidity dystonia dyskinesia wearing off akathisia
musculoskeletal
poor positioning/skin breakdown
neuropathic
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26. drooling 1.5L saliva per day 25% parotid (serous)
70% submaxillary (serous/mucin)
Autonomic (parasympatheic) control
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27. drooling secondary to posture and poor swallowing consequences:
for speech
for eating
embarrassment
soiling of clothes
lip irritation +/- secondary infection
aspiration, coughing, fear (PEG useless)
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28. drooling physio re posture SALT re swallowing anticholinergics
tablets
spray
patch
botulinum
radiotherapy
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29. motor decision time
immobile
but ‘safe’
mobile but
‘unsafe’
… do we increase, reduce or maintain the medication?
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30. psychosis decision time
immobile
but ‘sane’
mobile but
‘psychotic’
… do we increase, reduce or maintain the medication?
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31. drugs used Levo dopa - dopamine agonist - MAOBI - COMTI
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32. disease trajectory
disease duration
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33. the ‘end’
... Pd patients will survive if every ‘opportunity for death’ is aggressively treated ...
Palliative Care in Neurology; 2004
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34. logic & end-of-life decisions
cpr
ventilation
antibiotics
feeding
fluids
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35. Parkinson’s time course
■ MacMahon Fletcher Thomas Lee 2005
Parkinson’s time course
e d u c a t i o n
interprofessional interventions
drug Rx
NMS
diagnosis maintenance complex palliative
advanced directives
advanced care planning
AND etc
feeding – PEGs etc
wearing off
dyskinesia
Click here to continue 35

36. advance care planning
advance statement of wishes or preferences of care
advance decision to refuse treatment
appoint a Health & Welfare Attorney under a Lasting Power of Attorney
put your trust in your doctor, PDNS and the rest of the team caring for you
End