Assessment management of symptoms

Behavioural pain assessment Behavioural pain assessment for people with advanced for people with advanced

dementiadementia

Jo Hockley RN PhD MSc SCMJo Hockley RN PhD MSc SCMNurse Consultant for Care Homes, Nurse Consultant for Care Homes, St Christopher’s Hospice, LondonSt Christopher’s Hospice, London

Honorary Fellow, University of EdinburghHonorary Fellow, University of Edinburgh

Differences between dying at the Differences between dying at the ‘end-of-life’ from multiple medical ‘end-of-life’ from multiple medical problemsproblems && dying in ‘mid-life’ from dying in ‘mid-life’ from

cancer cancer ((Hockley & Clark, 2002)Hockley & Clark, 2002)

End-of-life care in NHsEnd-of-life care in NHsGreater concept of Greater concept of becoming a burdenbecoming a burdenNurses & care workers Nurses & care workers have greatest inputhave greatest inputLarger % cognitive Larger % cognitive impairmentimpairmentMultiple disease processMultiple disease processNatural ending clearerNatural ending clearer‘‘Care staff’ seen as Care staff’ seen as familyfamilyLonger dependency but Longer dependency but death can go unnoticeddeath can go unnoticed

Cancer Palliative CareCancer Palliative CarePatient & family often Patient & family often want life extendedwant life extendedMulti-disc model of Multi-disc model of carecareOften cognitively Often cognitively intactintactFocus on one diseaseFocus on one diseaseLife being ‘cut short’Life being ‘cut short’Good family supportGood family supportPalliative care often Palliative care often over monthsover months

PAIN - in nursing homesPAIN - in nursing homes

Vast majority of older people who Vast majority of older people who residereside in NHs in NHs suffer persistent pain - nsuffer persistent pain - not talking about ‘dying’ ot talking about ‘dying’ residentsresidents ( (Ferrell 1995; Ferrell 1995; Weiner, Peterson & Keefe 1999) Weiner, Peterson & Keefe 1999)

– 45-80%45-80% frail elderly NH experience pain frail elderly NH experience pain (Cornu et al 1997) (Cornu et al 1997)

– 23.7% & 26% NH residents23.7% & 26% NH residents experienced daily pain experienced daily pain (Proctor & Hirdes 2001; Bernabei et al 1998)(Proctor & Hirdes 2001; Bernabei et al 1998)

– Most pain is related to Most pain is related to musculoskeletal problemsmusculoskeletal problems and and neuropathiesneuropathies (Weiner & Hanlon 2001)(Weiner & Hanlon 2001)

– Elderly NH residents being sensitive to side effects Elderly NH residents being sensitive to side effects associated with many analgesic drugs – does not associated with many analgesic drugs – does not justify the failure to treat painjustify the failure to treat pain (Ferrell 1995)(Ferrell 1995)

SYMPTOMSSYMPTOMS PERCENTAGEPERCENTAGE

Mental confusionMental confusion 83%83%

Urinary Urinary incontinenceincontinence

72%72%

Pain*Pain* 64%64%

Low moodLow mood 61%61%

Constipation*Constipation* 59%59%

Loss of appetite*Loss of appetite* 57%57%

Most common symptoms identified during the last year of life among

people with dementia. [McCarthy et al, 1997]

Frampton, M (2003) – Frampton, M (2003) – systematic reviewsystematic review

Pain is under-reported and under-treated in Pain is under-reported and under-treated in cognitively impaired older people cognitively impaired older people (Cook et al (Cook et al 1999)1999)– Reporting habits of older people; the acceptance of reports Reporting habits of older people; the acceptance of reports

by staff; the ability of carers to identify painby staff; the ability of carers to identify pain

Decline in verbal communication makes Decline in verbal communication makes assessment very difficultassessment very difficultLack of validated and reliable assessment Lack of validated and reliable assessment tools for tools for thisthis population populationPoorly treated pain is associated with Poorly treated pain is associated with increased risk of disability & depressionincreased risk of disability & depression

Assessment of pain Assessment of pain

SPC / cancer model – many different pain SPC / cancer model – many different pain assessment tools:assessment tools:– ‘‘Faces’Faces’– Words to describe pain Words to describe pain [McGill Pain Questionnaire][McGill Pain Questionnaire]

– Visual analogue score (research)Visual analogue score (research)– Verbal Rating ScaleVerbal Rating Scale– Body chartsBody charts– Numerical Rating ScaleNumerical Rating Scale

PAIN – in dementiaPAIN – in dementia

Witnessed through residents’ Witnessed through residents’ behaviourbehaviour::– Crying out; rubbing an arm or a leg; Crying out; rubbing an arm or a leg;

decreased function/withdrawal; change in decreased function/withdrawal; change in sleep pattern; body bracingsleep pattern; body bracing

Needs a DIFFERENT assessment tool:Needs a DIFFERENT assessment tool:

Common signs & symptoms Common signs & symptoms of physical or affective discomfort of physical or affective discomfort

in late-stage dementiain late-stage dementia[Parke 1992; Parmalee et al 1993; Hurley et al 1992][Parke 1992; Parmalee et al 1993; Hurley et al 1992]

Increased agitation, fidgeting & repetitive Increased agitation, fidgeting & repetitive movementsmovements

Tense muscles, body bracingTense muscles, body bracing

Increased calling out, repetitive Increased calling out, repetitive verbalizationsverbalizations

Decreased functional ability, withdrawalDecreased functional ability, withdrawal

Change in sleep patternChange in sleep pattern

Increase in pulse, blood pressure & sweatingIncrease in pulse, blood pressure & sweating

BEHAVOURAL ASSESSMENT BEHAVOURAL ASSESSMENT TOOLSTOOLS

Verbal rating scale Verbal rating scale (Closs 2004)(Closs 2004)

DOLOPLUS 2 Scale DOLOPLUS 2 Scale (Lefebvre-Chapiro S. (Lefebvre-Chapiro S. 2001)2001)

Abbey Scale Abbey Scale (Abbey 2002)(Abbey 2002)

DisDAT - Disability Distress Assessment DisDAT - Disability Distress Assessment Tool Tool (Regnard, 2003)(Regnard, 2003)

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

Doloplus-2 scaleDoloplus-2 scale

Observation of patient behaviourObservation of patient behaviour10 different situations that could 10 different situations that could potentially reveal painpotentially reveal pain– Somatic reactions x 5Somatic reactions x 5– Psychomotor reactions x 2Psychomotor reactions x 2– Psychosocial reactions x 3Psychosocial reactions x 3

One of four different levels of pain One of four different levels of pain intensity [0-3] for each behaviourintensity [0-3] for each behaviourPotential total score of 30 – pain is Potential total score of 30 – pain is confirmed by a score of 5 or moreconfirmed by a score of 5 or more

DOLOPLUS-2DOLOPLUS-2 SCALESCALE

SOMATIC REACTIONSSOMATIC REACTIONSSomatic complaints: Somatic complaints: expression by word, cries, tears or moansexpression by word, cries, tears or moansProtective body postures adapted at restProtective body postures adapted at restProtection of sore areasProtection of sore areasExpression: Expression: grimaces/drawn + fixed/empty gazegrimaces/drawn + fixed/empty gazeSleep pattern: Sleep pattern: changed pattern/frequent wakingchanged pattern/frequent waking

PSYCHOMOTOR REACTIONSPSYCHOMOTOR REACTIONSWashing/dressing: Washing/dressing: Pain during washing and/or dressingPain during washing and/or dressingMobility:Mobility: Evaluates pain on movement: changing position, Evaluates pain on movement: changing position, transfer or walkingtransfer or walking

PSYCHOSOCIAL REACTIONSPSYCHOSOCIAL REACTIONSCommunication: Communication: verbal or non-verbalverbal or non-verbalSocial life: Social life: Meals, events, activities, visits etcMeals, events, activities, visits etcProblems of behaviour: Problems of behaviour: aggressiveness, agitation, confusion , aggressiveness, agitation, confusion , indifference, regression, asking for euthanasiaindifference, regression, asking for euthanasia

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

assessment of pain for people with assessment of pain for people with cognitive impairmentcognitive impairment

Behavoural observation scale – systematic Behavoural observation scale – systematic review review [[Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP (2006) BMC Geriatr. 2006 Jan 27;6:3](2006) BMC Geriatr. 2006 Jan 27;6:3]

– Doloplus2Doloplus2– PacslacPacslac

– AbbeyAbbey

Abbey Pain Scale Abbey Pain Scale (Abbey et al, 2004)(Abbey et al, 2004)For measurement of pain in people with dementia who cannot verbaliseFor measurement of pain in people with dementia who cannot verbalise

1.1. Vocalisation,Vocalisation, e.g.e.g.• whimpering, groaning, cryingwhimpering, groaning, crying

2.2. Facial expressionFacial expression, , e.g.e.g.• looking tense, frowning, grimacing, looking frightenedlooking tense, frowning, grimacing, looking frightened

3.3. CHANGE in body languageCHANGE in body language, , e.g.e.g.• fidgeting, rocking, guarding part of body, withdrawnfidgeting, rocking, guarding part of body, withdrawn

4.4. CHANGE in behaviour,CHANGE in behaviour, e.g.e.g.• increased confusion, refusing to eat, alterations in usual patterns:increased confusion, refusing to eat, alterations in usual patterns:

5.5. Physiological changePhysiological change, , e.g.e.g.• temperature, pulse or blood pressure outside normal limits, temperature, pulse or blood pressure outside normal limits,

Perspiring, flushing or pallorPerspiring, flushing or pallor

6.6. Physical changePhysical change, , e.g.e.g.• skin tears, pressure areas, arthritis, contractures, previous injuries:skin tears, pressure areas, arthritis, contractures, previous injuries:

Management of chronic Management of chronic pain in older people with pain in older people with

dementiadementia

Start ‘low’ and ‘go slow’Start ‘low’ and ‘go slow’

Use the WHO analgesic ladder – especially Use the WHO analgesic ladder – especially Step 2 [consider patches]Step 2 [consider patches]

REGULARREGULAR analgesics + co-analgesics analgesics + co-analgesics

PLUS PLUS APERIENTS APERIENTS – Softeners + pushersSofteners + pushers

REGULAR ANALGESICs + NSAIDsREGULAR ANALGESICs + NSAIDs– Research shows there is no long term benefit of Research shows there is no long term benefit of

changing from one Step 2 analgesic to anotherchanging from one Step 2 analgesic to another– Morphine is less nauseating than high dose Morphine is less nauseating than high dose

codeinecodeineOlder people have a greater sensitivity to Older people have a greater sensitivity to opiates – opiates – start oral morphine at 2.5-5mg/6hrlystart oral morphine at 2.5-5mg/6hrly

Use ‘long acting’ analgesics [ie MST or Use ‘long acting’ analgesics [ie MST or patchesButrans/Transdec/Fentanyl patch] patchesButrans/Transdec/Fentanyl patch] once pain control is properly once pain control is properly assessed/titrated on quick release morphineassessed/titrated on quick release morphine– NB Fentanyl patch 25mcg is equivalent to NB Fentanyl patch 25mcg is equivalent to

Morphine 20mgs/4hrlyMorphine 20mgs/4hrly

Rose’s storyRose’s storyVery 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:

o Arthritis since mid-20s

o Long term codeine / paracetamol medication regularly x 4 daily

o Prescribed Quotiepine for ‘behavour’

o Currently taking antibiotics for chest infection

Other Assessment Tools

NUTRITION– MUST ,MEALSONWHEELS, Burton

TISSUE VIABILTY– Waterlow score, Norton scale

DEPRESSION/ANXIETY– Geriatric Depression Score/ HAD

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:

Management of depression

Empathy and understanding

Importance of relationship

Drugs:– Citalopram 10-20mg daily– Mirtazepine 15-30mg nocte

We can’t do everything, but we mustn’t do nothing

[Palliative Care Toolkit, Help the Hospices 2008]