Gold standards Framework and prognostication
By:
Sian Williams Macmillan CNS/ Education Lead
Beacon Supportive and Palliative Care Service.
www.virgincare.co.uk
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
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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
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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
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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
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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 - cont
Dementia
– Unable to walk without assistance &
– Urinary/faecal incontinence &
– No consistently meaningful verbal communication &
– Unable to carry out ADL (barthel < 3)
+ any of the following:
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Weight loss
Pressure ulcers stage 3 or 4
Recurrent infection
Reduced oral intake / weight loss
Aspiration pneumonia
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Frailty
Performance status
deteriorating & combination
of at least 3:
Weakness
Significant weight loss
Slow walking speed
Low physical activity
Depression
Stroke
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
time
This 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.
2.
3.
4.
Prognostic Indicator Guidance (PIG) 4th Edition
Oct 2011 © The Gold Standards Framework
Centre In End of Life Care CIC, Thomas.K et al
Performance status Karnofsky and ECOG:
http://oncologypro.esmo.org/GuidelinesPractice/Practice-Tools/Performance-Scales
http://www.cancerresearchuk.org/cancerhelp/about-cancer/cancer-questions/performancestatus
PULSE
http://www.bmj.com/content/343/bmj.d4681
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