Key facts for End of life care planning- Prognostic indicators An update of latest GSF prognostic indicator guidance (PIG), its use and benefits for the EOL population Sarah Zaidi

End of life care for Advanced Frailty and End stage Long term conditions Causes of mortality (National Audit of statistics)

Every professionals responsibility not to ignore and not to act too late

The key players in end of life care planning and delivery Acute trusts -all depts Social services and care providers Primary care teams including out of hours All Specialists ( including mental health Dementia , and other “ologists” Community nursing teams Ambulance trusts

GSF PROGNOSTIC INDICATORS - PIG 6th version – 2016 (prev 2011) How can application of these assist in our clinical assessments , management plans and discharge planning to improve ongoing support and care coordination for all specialists (and generalists)? Early identification using GSF PIG and far earlier discussions with patients – is seen to provide the greatest impact in delivering improved care to patients.

GSF PIG update 6th edition 2016- more conditions, more guidance – more evidence on effectiveness and impact

What does End of life Mean? When should we commence discussions/planning? As soon as possible – in the last year(s) of life A patient has advanced disease(s) Prognosis may reasonably be thought to be not much longer than a year Significant disease but stable Progressive deterioration with fewer/shorter recovery periods Prognosis may be a few months or weeks Evidence of deterioration and increasing instability Person appears terminal Prognosis likely to be days or hours Moribund / actively dying

Importance of earliest possible identification Note: Decline trajectories ! Timescale is not predictable- can be erratic, sudden, gradual or a mixture of all 3. No 2 people with the same condition(s) will be the same/follow the same course. Note concept of frailty --- higher numbers of patients with multiple co-morbidities .

Use of the GSF tool RCGP 2011- GSF prognostic indicator guidance encourages professionals and provides guidance on the use clinical indicators / chronic symptoms across a wide range of conditions that may signify end of life phase (last year of life) by using the “ surprise question” Prognostication is not 100 % accurate- but that is still ok Sensitivity : it will only accurately detect and predict the last year of life @ 2/3 of the time- but evidence suggests it is highly specific to predicting mortality at one year Guidance talks about recognising different phases – blue , green, amber and red Speed of progression through these phases is often highly variable and individualized, promoting far earlier commencement of the care planning process to accommodate this variation

Application of PIG

Consider conditions and the ‘key’ GSF indicators Surprise question – applies to all and should be considered by all professionals in all specialties Dementia and generalized frailty: Declining swallow, aspiration risk Reduced oral intake, weight loss, Loss of mobility / bed bound Pressure area risk, double incontinence, loss of meaningful communication Neurological – mostly as for dementia /frailty Cancer – metastases with deteriorating functional status. Respiratory and cardiac- multiple crises (or severe exacerbations), LTOT, MRC score high or NYHA class high, declining functional status, anorexia /cachexia (despite optimal treatment) Renal – ESRF ( GFR < 15) and not suitable for dialysis or dialysis no longer controlling symptoms of fluid overload, declining functional status etc

Case examples? All EOL 89 year old man with history of previous CVA 2 years ago. 3 admissions this year with increasing confusion due to UTI and LRTI ( evidence of aspiration and poor swallow). Now chronically severely confused even following treatment, reduced oral intake , unable to mobilise without assistance of 2, with evidence of poor swallow long term 88 year old lady with severe COPD for last 20 years. Now requiring home oxygen. Frequent exacerbations despite maximal inhaled and oral therapy for last 6 months Also has evidence of CCF symptoms, reduced mobility, dependence of ADLS. Admitted with another mild exacerbation 94 year old lady with hypertension, AF CCF CKD and reduced mobility. 2 admissions to hospital this year with SOB. Diuretics increased on both admissions, BP meds reduced due to falls and postural instability. Discharged home with LTOT and package of QDS care as now requires assistance with most ADLS, poor mobility ( cannot transfer unassisted), reduced oral intake . 98 year old lady resident in full time nursing care facility. Multiple co-morbidities including heart failure, dementia , severe osteoarthritis. Bed bound, reduced oral intake, weight loss, double incontinence , pressure areas at risk, not communicating meaningfully for several months . Admission with recurrent UTI in last 12months.

GSF research : EOL stage prevalence @80% of those in residential care homes @ 30 % of those in acute hospital beds @1 % of population PIG applied to care home residents identifies more that need advance care planning Improves palliative care delivery and quality of life Application of PIG in acute hospital trust wards identifies those in last year of life. Facilitates treatment escalation/ceiling of care planning, enables more appropriate discharge Reduces avoidable readmissions in last years of life/Reductions in length of stay ( av 27 d) Reduces harms from inappropriate aggressive interventions. GP REGISTERS; Application of PIG in primary and community care helps to identify more of the expected cohort and planning to deliver better coordinated care

Some Other Facts Non cancer comorbidities remain grossly under recognized or recognized far too late to effect improved palliative care delivery Non cancer patients often sited from studies/surveys in having the poorest care experience and suffering the most harms from inappropriate /futile medical interventions Concept of Dementia as a progressive neuro-degenerative disease which eventually causes physical health problems and irreversible decline is still under recognized (both by lay public and professionals) Success rates of CPR are usually lowest in those with advanced /end stage frailty and dementia Note extremely high prevalence of dementia (diagnosed and undiagnosed) and dementia- related deaths amongst patients in long term residential care

Some other stats- example E.g. American study -67% of dementia-related deaths occurred in nursing homes 71% of residents with advanced dementia died within 6 months of admission Yet only 11% were referred for end of life care Non-palliative care is quite common in residents with advanced dementia and other multiple LTCs. This includes inappropriate interventions , laboratory tests, restraints, and intravenous therapy where harms outweigh any benefits Care outcomes are often worse in acute hospital settings for advanced /end stage patients with multiple comorbidities

What goes wrong ? – Delivers poor care outcomes? Mixed messages from professionals of different teams Poor alignment of treatment/support plans Potential harms can result from inappropriate interventions and/ or not meeting care needs Poor communication/explanation to patients and families Little / no exploration of wishes and exploring preferences for future care EOL patient is not recognised or recognized too late Care is not planned for considering future needs or inevitable decline

What are we trying to achieve? Improve quality of life Improve Experience of care Ensure Dignity and comfort at death Inform patients and their families Develop appropriate person centred care plans , respecting their wishes Identify most of the cohort who have EOL care needs (as early as possible) Deliver better more appropriate and coordinated care Protect patients and families from harms of futile interventions

Helpful phrases ? “Borrowed time “ “ Inevitable ongoing decline” “Hope for the best, but prepare for the worst.” “Plan for the future” Rainy day thinking “Borrowed time “ “ Inevitable ongoing decline” “What’s most important to you, if the worst happened ?” “ Quality of life in last phase… Comfort and Dignity always”

The right process- principles: Apply PIG to recognise the person with EOL needs Add to EOL register Estimate stage (if possible) Share the information- all relevant organizations. Discuss with person and plan their care Explain prognosis (can be uncertain but will progress) Explore wishes ACP- PPC PPD DNAR Explore scenarios for care delivery and where that should be delivered Consider ceilings of care discussions Record discussions and share them Deliver care Coordinate care- all relevant organizations Consider crisis plans Don’t forget- anticipatory prescribing- well in advance

Questions ?