Palliative care and Parkinsons disease

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Palliative care and Parkinsons disease

• Dr Jane Liddle
• Consultant Physician/Geriatrician
• Northern General Hospital

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All advanced and progressive neurological
disorders

• Mobility problems
• Communication difficulties
• Weakness
• Muscular spasm
• Swallowing difficulties
• Constipation
• Bladder dysfunction
• Psychiatric problems J Pall
  Care 07

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Idiopathic Parkinsons disease (IPD)

• Chronic neurodegenerative disorder
• Progressive, disabling and distressing
• Appropriate management and planning from start
  can prevent some of most distressing features
• Team work can solve most of problems and can help
  deliver better care cost effectively

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IPD

• Average age of diagnosis mid 60s
• About 2 population gt65 yrs has PD
• Disease course averages 15 yrs
• No cure or disease-modifying therapy
• ? Palliative from diagnosis

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Principles of Treatment

• Early specialist referral for confirmation of
  diagnosis
• Symptom control and attempts to modify disease
  progression
• Regular multidisciplinary assessment and
  specialist review
• Treatment of non-motor complications
• Access to a range of therapy services
• Provision of information and practical support
  for patients and carers
• Palliative care

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NICE Guidelines -2006

• Care for PD undertaken by a specialist
• Palliative care requirements be considered
  throughout all phases
• Patients and next of kin have opportunity to
  discuss end of life issues at any time

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Allied Health Professionals

• Nurse Specialists
• Clinical monitoring medication adjustment
• Continuing point of contact for support
• Reliable source of information about clinical
  social matters for patients and carers
• Physiotherapy
• Occupational therapy
• SALT

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4 stages

• Diagnosis reconciled with diagnosis and
  implications.
• Counselling
• Maintenance well controlled symptoms
• Complex complex drug regimes, side-effects,
• complications of PD
• Palliative -

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Palliative stage

• MacMahon and Thomas
• Adequate dopaminergic therapy ceases to be
  tolerated (side effects outweigh benefits)
• Surgery is inappropriate (DBS)
• Advanced comorbidity exists

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Duration of Stages

• STAGE yrs
• Diagnosis 1.6 /- 1.5
• Maintenance therapy 5.9 /- 4.8
• Complex 4.9 /- 4.4
• Palliative care 2.2 /- 2.2
• Total 14.6
• Mean age at onset 64 yrs
• Audit-D. McMahon

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IPD

• Stages will vary
• Pts and next of kin will differ in extent of
  discussions and timings
• Individualised approach listen to needs of pts
  and carers

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IPD

• Length of time in stage differs and unpredictable
• Can be difficult to determine when entering
  palliative phase
• Diverse symptoms and complex disabilities

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Advanced stage IPD

• Drug treatment no longer as effective
• An increasingly complex range of drugs
• off periods
• Dyskinesias
• Mobility problems and falls
• Swallowing problems and drooling
• Depression, anxiety, hallucinations, psychosis
• Reduced independence
• Less controlled and less predictable

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Commonnon-motor features

• Mental health problems - dementia, depression,
  psychosis, anxiety, apathy
• Falls
• Swallowing difficulties
• Sleep disturbance
• Autonomic disturbance
• Pain

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Sydney multicentre study 15 yrs

• 1/3 of 149 alive
• Non-motor features predominate
• Hallucinations and depression 50
• Cognitive decline 84 and Dementia 48
• Falls 81 and Fractures 23
• Choking 50
• Symptomatic postural hypotension 35
• Urinary incontinence 41
• L-dopa-induced dyskinesia / dystonia 95 -
  majority not disabling
• In a Care environment 40
• Hely M. Mov Disord 05

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Sydney multicentre study 20 yrs

• 74 died
• 83 have dementia
• Most in a care environment
• PD significant contributor to death in only 54

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Sydney multicentre study 20 yrs

• Only 47 see their specialist at 20yrs
• Frailty and cognitive decline preventing clinic
  attendance

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End of life care

• Outreach service with specialist interest
• Parkinson disease nurse specialist
• Day hospitals and multidisciplinary care

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The National Council for Palliative Care

• Focus on Neurology 2007
• The Final Pathway identifies variety of
  steps to
• mange the final stages of a LTNC
• Care pathways to standardise service
  provision
• for neurological conditions