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Assessment management of symptoms



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  • Different CONTEXT in which to die + Different DYING TRAJECTORY NHs - £460/week HOSPICES - £1700/week (then 2/3rds of that is fund raised)
  • A survey of 13,625 elderly cancer patients in NHs across the US revealed that 26% of all those with daily pain received no analgesics, and that a disproportionate number of this group were cognitively impaired (Bernabei et al 1998) Most pain is related to musculoskeletal problems and neuropathies – also cancer, but number of residents dying of a known cancer in NHs across Lothian is limited.
  • McCarthy’s paper from the Int. J. Geriatric Psychiatry (1997) What this paper also showed was the longer palliative care trajectory compared to that of cancer patients. For too long ‘dementia’ has been seen as a social disease. Often dementia is not put down on a death certificate as though it is not a bona fide disease to be dying from. Just like any other disease people with dementia will die – I will end my talk with a reference to the last few days of life with an adult suffering far advanced, incurable dementia Before closing with slide I would like to say that urinary incontinence is obviously prelavent in end stage dementia. Suffice it to say that often I have seen excellent care assistants ignorant of washing people after incontinence – and the importance of not increasing the incident of urinary tract infection especially in women because they don’t know how easy it is to contaminate the urine by not washing properly. What this paper does not report is the increase in falls as a natural part of the progression of dementia. What we are seeing in Reversed development of the first 5 years
  • Usual questions that any pain tool might have + the simple NUMERICAL pain intensity scale TO BE USED as an INITIAL ASSESSMENT
  • Common signs & symptoms of physical or affective discomfort in late-stage dementia increased agitation, fidgeting & repetitive movements tense muscles, body bracing increased call out, repetitive verbalizations decreased functional ability, withdrawal changes in sleep pattern increase in pulse, blood pressure & sweating
  • BEHAVOURAL ASSESSMENT - divided into 3 sections for staff to assess SOMATIC REACTIONS; PSYCHOMOTOR REACTIONS; PSYCHOSOCIAL REACTIONS - and how much these are different from the resident’s normal behaviour.
  • Morphine is much less nauseating than ‘codeine’ – and much less sedating that Co-codamol 30mg/500


  • 1. Behavioural pain assessment for people with advanced dementia Jo Hockley RN PhD MSc SCM Nurse Consultant for Care Homes, St Christopher’s Hospice, London Honorary Fellow, University of Edinburgh
  • 2. Differences between dying at the ‘end-of-life’ from multiple medical problems & dying in ‘mid-life’ from cancer ( Hockley & Clark, 2002)
    • End-of-life care in NHs
    • Greater concept of becoming a burden
    • Nurses & care workers have greatest input
    • Larger % cognitive impairment
    • Multiple disease process
    • Natural ending clearer
    • ‘ Care staff’ seen as family
    • Longer dependency but death can go unnoticed
    • Cancer Palliative Care
    • Patient & family often want life extended
    • Multi-disc model of care
    • Often cognitively intact
    • Focus on one disease
    • Life being ‘cut short’
    • Good family support
    • Palliative care often over months
  • 3. PAIN - in nursing homes
    • Vast majority of older people who reside in NHs suffer persistent pain - n ot talking about ‘dying’ residents ( Ferrell 1995; Weiner, Peterson & Keefe 1999)
      • 45-80% frail elderly NH experience pain (Cornu et al 1997)
      • 23.7% & 26% NH residents experienced daily pain (Proctor & Hirdes 2001; Bernabei et al 1998)
      • Most pain is related to musculoskeletal problems and neuropathies (Weiner & Hanlon 2001)
      • Elderly NH residents being sensitive to side effects associated with many analgesic drugs – does not justify the failure to treat pain (Ferrell 1995)
  • 4. Most common symptoms identified during the last year of life among people with dementia. [McCarthy et al, 1997] SYMPTOMS PERCENTAGE Mental confusion 83% Urinary incontinence 72% Pain* 64% Low mood 61% Constipation* 59% Loss of appetite* 57%
  • 5. Frampton, M (2003) – systematic review
    • Pain is under-reported and under-treated in cognitively impaired older people (Cook et al 1999)
      • Reporting habits of older people; the acceptance of reports by staff; the ability of carers to identify pain
    • Decline in verbal communication makes assessment very difficult
    • Lack of validated and reliable assessment tools for this population
    • Poorly treated pain is associated with increased risk of disability & depression
  • 6. Assessment of pain
    • SPC / cancer model – many different pain assessment tools:
      • ‘ Faces’
      • Words to describe pain [McGill Pain Questionnaire]
      • Visual analogue score (research)
      • Verbal Rating Scale
      • Body charts
      • Numerical Rating Scale
  • 7. PAIN – in dementia
    • Witnessed through residents’ behaviour :
      • Crying out; rubbing an arm or a leg; decreased function/withdrawal; change in sleep pattern; body bracing
    • Needs a DIFFERENT assessment tool:
  • 8. Common signs & symptoms of physical or affective discomfort in late-stage dementia [Parke 1992; Parmalee et al 1993; Hurley et al 1992]
    • Increased agitation, fidgeting & repetitive movements
    • Tense muscles, body bracing
    • Increased calling out, repetitive verbalizations
    • Decreased functional ability, withdrawal
    • Change in sleep pattern
    • Increase in pulse, blood pressure & sweating
        • Verbal rating scale (Closs 2004)
        • DOLOPLUS 2 Scale (Lefebvre-Chapiro S. 2001)
        • Abbey Scale (Abbey 2002)
        • DisDAT - Disability Distress Assessment Tool (Regnard, 2003)
  • 10.
    • Isabel’s story:
    • Moderate degree of dementia
    • Had lived a couple of years in the NCH with her husband
    • Husband had dementia
    • Isabel always wandered around the home
    • One day I noticed she was sitting & rubbing her knees .
    • VBS
  • 11. Doloplus-2 scale
    • Observation of patient behaviour
    • 10 different situations that could potentially reveal pain
      • Somatic reactions x 5
      • Psychomotor reactions x 2
      • Psychosocial reactions x 3
    • One of four different levels of pain intensity [0-3] for each behaviour
    • Potential total score of 30 – pain is confirmed by a score of 5 or more
    • Somatic complaints: expression by word, cries, tears or moans
    • Protective body postures adapted at rest
    • Protection of sore areas
    • Expression: grimaces/drawn + fixed/empty gaze
    • Sleep pattern: changed pattern/frequent waking
    • Washing/dressing: Pain during washing and/or dressing
    • Mobility: Evaluates pain on movement: changing position, transfer or walking
    • Communication: verbal or non-verbal
    • Social life: Meals, events, activities, visits etc
    • Problems of behaviour: aggressiveness, agitation, confusion , indifference, regression, asking for euthanasia
  • 13.
    • Isabel’s story contd:
    • Already taking tablets on Step 2 WHO ladder
    • Continued NSAIDs and commenced oral morphine 6hrly 5mgs
    • Increased to 30mgs / 6hrly – then to MST 30mgs bd
    • Difficulty swallowing tablets – Fentanyl patch 25mcg
    • Fentanyl increased to 50mcg – started walking around NCH
  • 14. assessment of pain for people with cognitive impairment
    • Behavoural observation scale – systematic review [ Zwakhalen SM , Hamers JP , Abu-Saad HH , Berger MP (2006) BMC Geriatr. 2006 Jan 27;6:3]
      • Doloplus2
      • Pacslac
      • Abbey
  • 15. Abbey Pain Scale (Abbey et al, 2004) For measurement of pain in people with dementia who cannot verbalise
    • Vocalisation, e.g.
      • whimpering, groaning, crying
    • Facial expression , e.g.
      • looking tense, frowning, grimacing, looking frightened
    • CHANGE in body language , e.g.
      • fidgeting, rocking, guarding part of body, withdrawn
    • CHANGE in behaviour, e.g.
      • increased confusion, refusing to eat, alterations in usual patterns:
    • Physiological change , e.g.
      • temperature, pulse or blood pressure outside normal limits, Perspiring, flushing or pallor
    • Physical change , e.g.
      • skin tears, pressure areas, arthritis, contractures, previous injuries:
  • 16.  
  • 17. Management of chronic pain in older people with dementia
    • Start ‘low’ and ‘go slow’
    • Use the WHO analgesic ladder – especially Step 2 [consider patches]
    • REGULAR analgesics + co-analgesics
      • Softeners + pushers
  • 18.
      • Research shows there is no long term benefit of changing from one Step 2 analgesic to another
      • Morphine is less nauseating than high dose codeine
    • Older people have a greater sensitivity to opiates – start oral morphine at 2.5-5mg/6hrly
    • Use ‘long acting’ analgesics [ie MST or patchesButrans/Transdec/Fentanyl patch] once pain control is properly assessed/titrated on quick release morphine
      • NB Fentanyl patch 25mcg is equivalent to Morphine 20mgs/4hrly
  • 19. Rose’s story
    • Very advanced dementia – used to like to have a doll to cuddle. I had known of her but never really chatted to her. Crying out – daughter arrived:
    • Arthritis since mid-20s
    • Long term codeine / paracetamol medication regularly x 4 daily
    • Prescribed Quotiepine for ‘behavour’
    • Currently taking antibiotics for chest infection
  • 20. Other Assessment Tools
      • Waterlow score, Norton scale
      • Geriatric Depression Score/ HAD
  • 21. GERIATRIC DEPRESSION SCALE (GDS) NAME: DATE: 1 Are you basically satisfied with your life? Yes No 2 Have you dropped many of your activities or interests? Yes No 3 Do you feel that your life is empty? Yes No 4 Do you often feel bored? Yes No 5 Are you in good spirits most of the time? Yes No 6 Are you afraid that something bad is going to happen to you? Yes No 7 Do you feel happy most of the time? Yes No 8 Do you often feel helpless? Yes No 9 Do you prefer to stay at home, rather than going out and doing new things? Yes No 10 Do you feel you have more problems with your memory than most? Yes No 11 Do you think it is wonderful to be alive? Yes No 12 Do you feel pretty worthless the way you are now Yes No 13 Do you feel full of energy? Yes No 14 Do you feel that your situation is hopeless? Yes No 15 Do you think that most people are better off than you are? Yes No > 5 problems (answers in BOLD) indicates probable depression TOTAL:
  • 22.  
  • 23. Management of depression
    • Empathy and understanding
    • Importance of relationship
    • Drugs:
      • Citalopram 10-20mg daily
      • Mirtazepine 15-30mg nocte
  • 24.
    • We can’t do everything, but we mustn’t do nothing
    • [Palliative Care Toolkit,
    • Help the Hospices 2008]