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Gold standards Framework and prognostication

By:

Sian Williams Macmillan CNS/ Education LeadBeacon Supportive and Palliative Care Service.

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Definition of End of Life Care

People are ‘approaching the end of life’ when they are likely to die within the next 12 months.

This includes people with: Advanced, progressive, incurable conditions General frailty and co-existing conditions that mean they are expected to die within 12 months Existing conditions if they are at risk of dying from a sudden acute crisis in their condition Life-threatening acute conditions caused by sudden catastrophic events.

General Medical Council, UK 2010

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Illness Trajectories

“Dying is very complex. People are likely to die in old age after a prolonged decline beset by multiple

conditions”

Leadbetter & Garber, 2010

People with dementia have a slower trajectory over 8

years.

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Triggers

The surprise question (GSF) ‘Would you be surprised if this patient were to die in

the next few months, weeks, days’?

Critical events or significant deterioration

Choice/need from the patient for comfort care only, not wanting curative treatment

Specific clinical indicators related to certain conditions.

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Functional Assessments

Barthel Index describes basic Activities of Daily Living (ADL) as ‘core’ to the functional assessment. E.g. feeding, bathing, grooming, dressing, continence, toileting, transfers, mobility

Karnofksy Performance Status Score 0 -100 ADL scale .

WHO/ECOG Performance Status 0 -5 scale of activity

PULSE ‘screening’ assessment - P (physical condition); U (upper limb function); L (lower limb function); S (sensory); E (environment).

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Prognostic Indicators [PI]

Detailed holistic assessment– General physical decline – Need for support– Sentinel event– Eligible for DS1500

Advanced disease with deteriorating symptom burden– No further active treatment

General Clinical Predictors:– Progressive weight loss: greater than 10% loss over 6 months– Serum albumin level < 25mg/L– Reduced ‘performance status’ > 50%; dependence with most

activities of daily living (ADL)– Co-morbidity

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Gold Standard Framework - Prognostic Indicator Guidance

Chronic Heart Failure– NYHA Stage III or IV - SoB at rest or minimal exertion – Repeated hospital admissions with symptoms of CHF– Difficult physical and psychological symptoms despite optimal

therapy

Chronic Respiratory Disease– Disease severe (FEV1 <30%predicted)– Recurrent hospital admissions– Fulfils long term Oxygen therapy criteria– MRC grade 4/5- SoB after 100metres on the level– Signs and symptoms of right heart failure – Combination of anorexia, previous ITU/NIV/resistant organism,

depression– > 6 weeks of systemic steroids for COPD in the preceding 6

months

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Prognostic Indicator Guidance - cont

Chronic Kidney Disease– CKD stage 5 (eGFR<15ml/min)

– Not choosing or discontinued dialysis

– Increasing severe symptoms from co-morbid conditions• nausea and vomiting, anorexia, pruritus, reduced functional status,

intractable fluid overload.

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General Neurological diseases [PI]

Progressive deterioration in physical and or cognitive function despite optimum therapy

Symptoms – Complex and difficult to control

Dysphagia leading to aspiration pneumonia, sepsis, breathless

Speech problems leading to difficulty communicating.

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Prognostic Indicator Guidance - cont

Motor neurone disease – Marked rapid decline– First episode of aspirational pneumonia– Increased cognitive difficulties– Low vital capacity (below 70% of predicted spirometry)– Dyskinesia, mobility problems and falls– Communication difficulties

Parkinson’s Disease– Significant complex symptoms– Drug treatment less effective or complex regime– Reduced independence – More ‘off periods’ as condition less controlled– Dyskinesia, falls– Psychiatric signs (depression, anxiety, hallucinations, psychosis)– Slow, weak, exhaustion

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Prognostic Indicator Guidance - contDementia– Unable to walk without assistance &

– Urinary/faecal incontinence &

– No consistently meaningful verbal communication &

– Unable to carry out ADL (barthel < 3)

+ any of the following:

– Weight loss– Pressure ulcers stage 3 or 4– Recurrent infection– Reduced oral intake / weight loss– Aspiration pneumonia

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Frailty Stroke

Performance status deteriorating & combination of at least 3:

Weakness

Significant weight loss

Slow walking speed

Low physical activity

Depression

Minimal conscious level

Medical complications

Lack of improvement within 3 months

Cognitive impairment/ post stroke dementia

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Predicting needs rather than exact prognostication

This is more about meeting needs than giving defined timescales The focus is on anticipating patients’ likely needs so that the right care can be provided at the right timeThis is more important than working out the exact time remaining and leads to better proactive care in alignment with preferences Rainy day thinking (GSF)

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Assess all patients: recall medical history and compare with last assessment!

Mrs C – A 91 year old lady with COPD, heart failure, osteoarthritis, and increasing signs of dementia, who lives in a care home. Following a fall, she grows less active, eats less, becomes easily confused and has repeated infections. She appears to be ‘skating on thin ice’. Difficult to predict but likely slow decline

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What are the main concerns for the patient?

Important to re-assess physical, psychological, spiritual and social needs

Review what are the changes over the last 3 months?

Anticipate Key concerns/developments

Listen to families concerns

Contact GP to come and discuss plan with family and manager/team lead/ and DN if residential home

Complete Proactive Anticipatory Care Plan documentation PACE with GP and significant others.

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Quality End of Life Care

Where we cannot alter the course of events we must at least (when the patient so wishes) predict sensitively and together plan care, for better or for worse

For those people who do not have capacity we need to consider an end of life care plan.

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Any questions?

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Reference

1. Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas.K et al

2. Performance status Karnofsky and ECOG: http://oncologypro.esmo.org/Guidelines-Practice/Practice-Tools/Performance-Scales

3. http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/performance-status

4. PULSE http://www.bmj.com/content/343/bmj.d4681