Presentation on theme: "Gold standards Framework and prognostication"— Presentation transcript:
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 LeadBeacon 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 conditionsGeneral frailty and co-existing conditions that mean they are expected to die within 12 monthsExisting conditions if they are at risk of dying from a sudden acute crisis in their conditionLife-threatening acute conditions caused by sudden catastrophic events.General Medical Council, UK 2010Earlier identification of people nearing the end of their life and inclusion on the register leads to earlier planning and better co-ordinated careWe 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, 2010People 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 conditionsUnderstanding of these helps with planningOrgan- 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 capacityWe need to be aware that unless someone has a sudden death that the trajectory is often reflected through:Periods of relative stabilityIntermittent crisis-Phases of changing needs=critical events and stepped changes in disease progression should be recognised as triggers for end of life care approachUltimately end of life careThese trajectories show the importance for us to reappraise the treatment and realistic interventions for the individualMove 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 deteriorationChoice/need from the patient for comfort care only, not wanting curative treatmentSpecific 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 includesCritical 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, mobilityKarnofksy Performance Status Score ADL scale .WHO/ECOG Performance Status 0 -5 scale of activityPULSE ‘screening’ assessment - P (physical condition); U (upper limb function); L (lower limb function); S (sensory); E (environment).FrailtyIndividuals who present with Multiple co morbidities with significant impairment in day to day living and: Deteriorating functional score e.g. performance status – Barthel/ECOG/KarnofksyWhat 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 deadKarnofsky out of a 100 = healthy 50 = 3 in ECOG, 10 moribund and 0 dead (goes down in 10s)
7 Gold Standard Framework - Prognostic Indicator Guidance Chronic Heart FailureNYHA Stage III or IV - SoB at rest or minimal exertionRepeated hospital admissions with symptoms of CHFDifficult physical and psychological symptoms despite optimal therapyChronic Respiratory DiseaseDisease severe (FEV1 <30%predicted)Recurrent hospital admissionsFulfils long term Oxygen therapy criteriaMRC grade 4/5- SoB after 100metres on the levelSigns and symptoms of right heart failureCombination of anorexia, previous ITU/NIV/resistant organism, depression> 6 weeks of systemic steroids for COPD in the preceding 6 monthsExamples of disease specific clinical indicators will be discussedThe 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 :Class I patients have no limitation of physical activityClass II patients have slight limitation of physical activityClass III patients have marked limitation of physical activityClass IV patients have symptoms even at rest and are unable to carry on any physical activity without discomfortSigns 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 useNIV = Non invasive ventilation
8 Prognostic Indicator Guidance - cont Chronic Kidney DiseaseCKD stage 5 (eGFR<15ml/min)Not choosing or discontinued dialysisIncreasing severe symptoms from co-morbid conditionsnausea 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 frailSymptomatic renal failureSurprise questionNB 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 therapySymptoms – Complex and difficult to controlDysphagia leading to aspiration pneumonia, sepsis, breathlessSpeech problems leading to difficulty communicating.These are the general changes but we should try and identify the more specific changes such asSlide ..
10 Prognostic Indicator Guidance - cont Motor neurone diseaseMarked rapid declineFirst episode of aspirational pneumoniaIncreased cognitive difficultiesLow vital capacity (below 70% of predicted spirometry)Dyskinesia, mobility problems and fallsCommunication difficultiesParkinson’s DiseaseSignificant complex symptomsDrug treatment less effective or complex regimeReduced independenceMore ‘off periods’ as condition less controlledDyskinesia, fallsPsychiatric signs (depression, anxiety, hallucinations, psychosis)Slow, weak, exhaustionParkinson’s diseaseRecognition that the condition has become less controlled and predictableDyskinesia = An impairment in the ability to control movements, characterized by spasmodic or repetitive motions or lack of coordinationMultiple sclerosisSignificant complex symptomsDysphagia leading to aspiration pneumonias, recurrent admissions and poor nutritional statusCommunication difficulties e.g dysarthria +/- FatigueCognitive impairment, notably onset of dementia
11 Prognostic Indicator Guidance - cont DementiaUnable to walk without assistance &Urinary/faecal incontinence &No consistently meaningful verbal communication &Unable to carry out ADL (barthel < 3)+ any of the following:Weight lossPressure ulcers stage 3 or 4Recurrent infectionReduced oral intake / weight lossAspiration pneumoniaFor facilitations information if asked as Barthel scores may be used in care homesDecreased 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 StrokePerformance status deteriorating & combination of at least 3:WeaknessSignificant weight lossSlow walking speedLow physical activityDepressionMinimal conscious levelMedical complicationsLack of improvement within 3 monthsCognitive impairment/ post stroke dementia
13 Predicting needs rather than exact prognostication This is more about meeting needs than giving defined timescalesThe 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 preferencesRainy 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 needsReview what are the changes over the last 3 months?Anticipate Key concerns/developmentsListen to families concernsContact GP to come and discuss plan with family and manager/team lead/ and DN if residential homeComplete 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 uncertaintyCommunication 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 worseFor those people who do not have capacity we need to consider an end of life care plan.