1. Gold standards Framework and prognostication
I will go through some facts to make us reflect on what we should be looking for to predict need for the patients with advanced illness.
By:
Sian Williams Macmillan CNS/ Education Lead
Beacon Supportive and Palliative Care Service.

2. 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
Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better co-ordinated care
We will go through what we need to consider- next slide

3. People with dementia have a slower trajectory over 8 years.
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.
We appreciate that identifying a patients trajectory may be complicated and we see hear that there are variances between conditions
Understanding of these helps with planning
Organ- this reflects how there is a down hill with acute events and possible sudden deaths, which is why we need to be open and honest with pts.
The dementia reflects why it is so difficult as the pts possible 10 year trajectory needs reviewing regularly and revisit QoL, ACP and Mental capacity
We need to be aware that unless someone has a sudden death that the trajectory is often reflected through:
Periods of relative stability
Intermittent crisis-
Phases of changing needs
=critical events and stepped changes in disease progression should be recognised as triggers for end of life care approach
Ultimately end of life care
These trajectories show the importance for us to reappraise the treatment and realistic interventions for the individual
Move onto to next slide to explore further

4. 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.
“Would you be surprised if they were to die in the next 6-12 months?” The surprise question can be applied to years/months/weeks/days and trigger the appropriate actions. The surprise question –
an intuitive question integrating co-morbidity, social and other factors. If you would not be surprised - what measures might be taken to improve their quality of life now and in preparation for possible further decline.
Are they on the Supportive/palliative care register – ideally they should be as at this stage we are looking at weeks rather than many months, but the research reflects that non- cancer pts are being missed out.
Prognostic guidance = GSF also includes
Critical events – we need to question what is causing this?
How many Admissions to hospital how often in the last year. What were the reasons for admission?
Choice / Need - The patient with advanced disease makes a choice for comfort care only, not ‘curative’ treatment, or is in special need of supportive / palliative care eg refusing renal transplant

5. 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 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).
Frailty
Individuals who present with Multiple co morbidities with significant impairment in day to day living and:
 Deteriorating functional score e.g. performance status – Barthel/ECOG/Karnofksy
What is the Barthel Index?
The Barthel Index consists of 10 items that measure a person's daily functioning specifically the activities of daily living and mobility. The items include feeding, moving from wheelchair to bed and return, grooming, transferring to and from a toilet, bathing, walking on level surface, going up and down stairs, dressing, continence of bowels and bladder.
Top score is 20 the lower the worse the pt is.
How is the Barthel Index used?
The assessment can be used to determine a baseline level of functioning and can be used to monitor improvement in activities of daily living over time.
ECOG out of 5 – 0 no complaints - 5 dead
Karnofsky out of a 100 = healthy 50 = 3 in ECOG, 10 moribund and 0 dead (goes down in 10s)

6. 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
Prompts for discussion- recognising it is difficult and impossible and unhelpful to estimate accurate prognosis, but there are indicators to help us plan and realise that the person will die from their condition.
We need to observation, listening and asking open questions to inform us of how the person is changing
Holistic assessment: capturing physical, psychological, spiritual and social triggers
Assessment - is important to be able to identify how the person is coping, how they are physically feeling within themselves, what strengths do they look to, what is now important to them- (has this changed)
Sentinel event - A term for a ‘headliner’ event that may cause an unexpected or unanticipated outcome, death or serious physical or psychological injury i.e. transfer to nursing home, bereavement, serious fall
Symptoms- have they changed, worsened
Biological markers- we need to monitor bloods to compare and support what we may be seeing- Albumin, renal function
Performance status – used in oncology MDT so good to relay your findings.
Co morbidity is the biggest indicator of mortality
Patient insight- did we hear them say “ what….” How long have I got?’
this is a cue that they may know something we have blocked!
Prognostic Indicator Guidance (PIG) 4th Edition oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas.K et al for Disease specific clinical indicators

7. 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
Examples of disease specific clinical indicators will be discussed
The New York Heart Association (NYHA) classification for heart failure comprises 4 classes, based on the relationship between symptoms and the amount of effort required to provoke them, as follows[1] :
Class I patients have no limitation of physical activity
Class II patients have slight limitation of physical activity
Class III patients have marked limitation of physical activity
Class IV patients have symptoms even at rest and are unable to carry on any physical activity without discomfort
Signs and symptoms of heart failure include tachycardia and manifestations of venous congestion (eg, oedema) and low cardiac output (eg, fatigue).
Breathlessness is a cardinal symptom of left ventricular (LV) failure that may manifest with progressively increasing severity.
ITU = Intensive care use
NIV = Non invasive ventilation

8. 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.
Persons condition is deteriorating with 2 indicators-
Pts with stage 5 kidney disease who are not seeking or are discontinuing renal replacement therapy (RRT)
From choice or too frail
Symptomatic renal failure
Surprise question
NB many with stage 5 CKD have stable impaired renal function and do not progress or need RRT

9. 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.
These are the general changes but we should try and identify the more specific changes such as
Slide ..

10. 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
Parkinson’s disease
Recognition that the condition has become less controlled and predictable
Dyskinesia = An impairment in the ability to control movements, characterized by spasmodic or repetitive motions or lack of coordination
Multiple sclerosis
Significant complex symptoms
Dysphagia leading to aspiration pneumonias, recurrent admissions and poor nutritional status
Communication difficulties e.g dysarthria +/- Fatigue
Cognitive impairment, notably onset of dementia

11. 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:
Weight loss
Pressure ulcers stage 3 or 4
Recurrent infection
Reduced oral intake / weight loss
Aspiration pneumonia
For facilitations information if asked as Barthel scores may be used in care homes
Decreased ADL may be measured using the Barthel score. <3 is indicative of concern.
Each section focuses on one area and scored then added for final score. The more independent the person the higher the score. Out of 20 if using 0,1,2,3.
Important to talk to people whilst they capacity so they can discuss how they want to be managed in later stages

12. 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

13. 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)
People tend to give undue weight to prognosis and too little to the importance of planning for possible need.
Focus should be pragmatic, instinctive predicting the rate and decline for the person in front of us.
To do this we need to look at their medical history, and assess their last year as a comparison of change.
Rainy day thinking – anticipatory and insurance type thinking relates more to meeting likely needs and planning ahead. Hope the best, plan for the worst!

14. 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

15. 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.
Ask the group to say what they identify in their client population, thinking of planning how one is cared for and where.
Most complaints and families stress is due to lack of planning and uncertainty
Communication and Assessment KEY

16. 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.

17. Any questions? 17 17

18. Reference
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:
PULSE