Improving End of Life Care- how can we help ? www.goldstandardsframework.org.uk info@gsfcentre.co.uk Sept 2011 Prof Keri Thomas National Clinical Lead GSF Centre, Hon Professor End of Life Care Birmingham University, Royal College of GPs Clinical Expert in End of Life Care

Plan Why is end of life care important ? How can GPs best help? What is RCGP doing? How can the National Gold Standards Framework (GSF) Centre in End of Life Care help you improve your care?

Key Messages End of Life Care is important and affects us all - It includes everyone in your care home (not just the dying) Hospital deaths are expensive and often avoidable - too few people die at home/in their place of choice Improved working with GPs can help – RCGP is trying to help GSF helps improve GP collaboration - helps improve quality of care ,coordination and reduce hospitalisation GSF is used in many settings (care homes biggest training programme) – consider GSF as part of your training info@gsfcentre.co.uk

1. End of Life Care in Numbers 1% of the population dies each year 17% increase in deaths from 2012 60-70% people do not die where they choose 35% home death rate – 18% home, 17% care home 40% of deaths in hospital could have occurred elsewhere 75% deaths are from non-cancer conditions 85% of deaths occur in people over 65 £19k non cancer ,£14k cancer - av.cost/pt/final year 2.5 million generalist workforce-5,500 Pall.Care specialists.

Rapid, erratic and slow dying trajectories- After Lynn Three ways of dying Rapid, erratic and slow dying trajectories- After Lynn Rapid eg Cancer Erratic eg Organ Failure GP has about 20 deaths / year Vision for the future of pall medicine 3 trajectories 3 dimensions of need Hospice, hospital, and community including nursing homes Wide construct of palliative care But focus Sudden death / Other Slow eg Dementia, frailty

Frailty is the future ! Frailty/multi morbidity is biggest killer Multi-morbidity defined as the co-existence of two or more long term conditions in an individual (Mercer et al, 2009). multimorbidity is now “the norm” in family practice 61% in 18 - 44 year olds, 93% in 45- 64 year olds 98% in those over 65 years of age (Fortin, Lapointe, Hudon, Vanasse. Multimorbidity is common to family practice: is it commonly researched? Can Fam Physician 2005; 52(2): level of multi-morbidity was an independent predictor of prognosis amongst patients with established cardiovascular disease (Payne et al) RCGP doing specific work in multi morbidity as inherent part of GP workload

A matter of life and death Reframe our thinking-the 1% rule. Every GP has about 20 patients who are in the last year of life.. ….how can we make the best of this last year ? “Its all about how you live”

At individual Level Proactive planning - Bill 82 year old in care home -COPD, frailty+ other conditions Poor quality of life and crisis admissions to hospital Ad hoc visits -no future plan discussed Staff and family struggling to cope No advance care planning, no life closure discussion Crisis- worsens at weekend - calls 999 paramedics admit to hospital- A&E- 8 hour wait on trolley-dies on ward alone Family given little support in grief - staff feel let family down No reflection by teams- no improvement Expensive for NHS - inappropriate use of hospital Unacceptably poor level of care especially for the elderly

English NHS Policy Developments in End of Life Care (EOLC) NHS EOLC Programme 2005 -supported best practice GSF- care in final year or so of life- community focus LCP- care of dying – final days- hospital focus ACP- advance care planning – Preferred Priorities of Care (PPC) an example Department of Health EOLC Strategy - June 08 NHS mainstream focus + Quality Markers Affirms importance of advance care planning National Audit Office Report in EOLC – Nov 08 Economic argument-reducing hospitalisation, enabling generalist staff QIPP End of Life Care - March 11

Definition of End of Life Care General Medical Council, NICE People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those 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. GMC definition - www.gmc-uk.org/static/documents/content/End_of_life.pdf)

2. RCGP End of Life Care Strategy End of Life Care is a priority for College June 09 Primary care has key role multi-morbidity biggest killer collaboration with RCN 10 specific recommendations UK wide RCGP EOLC Working group

“Caring for people nearing the end of their lives is part of the core business of General Practice. RCGP End of life Care Strategy June 09 The GP and the primary care team occupy a central role in the delivery of end of life care in the community. This role is greatly valued by patients and remains pivotal to the effective provision of all other care. The importance of the holistic role of the family doctor is poised to come into its own in a way never previously encountered. This strategy affirms the College’s commitment to promote excellence in end of life care”

Summary of 10 Recommendations Establish an End of Life Care Working Group Build on current good practice eg GSF , ACP. LCP Recognise and reward best practice – awards, accreditation Review and refine existing educational resources Support research and development of innovative best practice Develop and promote use of audit tools to improve practice Strengthen team-working with nurses, and primary care team Care homes- promote good practice Endorse Advance Care Planning for patients on palliative care registers Improve Out of Hours Palliative Care

RCGP EOLC Care Homes group Undertook survey of key areas for care homes stakeholders Supports guidance on allocation of one GP practice/ home (with BGS) Develop GP with a Special interest in care homes Support better commissioning Recommend using Patient Charter

RCGP RCN End of Life care Patient Charter – sent to every GP Practice this week via RCGP Newsletter

RCGP RCN End of Life Care Patient Charter if and when you want us to, we will: Listen to your wishes about the remainder of your life, including your final days and hours, answer as best we can any questions that you have and provide you with the information that you feel you need. Help you think ahead so as to identify the choices that you may face, assist you to record your decisions and do our best to ensure that your wishes are fulfilled, wherever possible, by all those who offer you care and support. Talk with you and the people who are important to you about your future needs. We will do this as often as you feel the need, so that you can all understand and prepare for everything that is likely to happen. Endeavour to ensure clear written communication of your needs and wishes to those who offer you care and support both within and outside of our surgery hours.

RCGP RCN End of Life care Patient Charter – sent to every GP Practice this week via RCGP Newsletter Download from RCGP website with guidance and letter of introduction New RCGP microsite Can you use this to discuss with your GPs ? Can you ask them to include your patients on their Palliative care register?

3. The National GSF Centre in End of Life Care A Training Centre to enable generalist frontline staff to deliver a ‘gold standard’ of care for all people nearing the end of life “Every organisation involved in providing end of life care will be expected to adopt a coordination process , such as the GSF” DH End of Life Care Strategy July 08

What does GSF aim to do? Three key messages  Improve quality of care  Improve coordination, collaboration + cross-boundary communication 3.  Decrease hospitalisation + cost

What difference does GSF make? 1. Quality - Attitude awareness and approach Better quality patient experience of care perceived Greater confidence, awareness, focus and job satisfaction 2. Coordination/Collaboration- structure, processes, and patterns Better organisation, coordination, documentation & consistency of standards, Better communication between teams, co-working and cross-boundary care 3. Patient Outcomes – hospitalisation, ACP alignment Reduced crises, hospital admissions, length of stay e.g. halve hospital deaths - more patients dying in preferred place Care delivered in alignment with patient and family preferences

GSF is about … Enabling Generalists - improving confidence of staff Organisational - system change Pre-planning care in the final year of life - proactive care Patient led - focus on meeting patient and carer needs Care for all, regardless of diagnoses - non-cancer, frail Care closer to home - decrease hospitalisation Cross boundary care - home, care home, hospital, hospice

NEW from 2012 ! New GSF Virtual Learning Zone so better localised learning for group participation in your care home Development of more GSF Regional Centres for teaching nearer you

1 GSF Training Programmes GSF Primary Care From 2000- foundation GSF mainstreamed (QOF) 95% GP practices have palliative care register and meeting June 09 Next Stage GSF ‘Going for Gold’ new training programme GSF Care Homes From 2004 -Over 2000 care homes trained Comprehensive training and accreditation programmes 200 / year accredited GSF Acute Hospitals 2008 -Phase 1 pilot 15 hospitals Improving cross boundary care 2011- Phase 2 10 hospitals GSF Domiciliary care 3 pilot sites of 100 carers eg Manchester Train the trainers in GSF key skills + basic clinical care Plus other training programmes

a) GSF Primary care Review article of current evidence - Improving end of life care: a critical review of the Gold Standards Framework in Primary care Shaw K Clifford C Thomas K Pall Med 2010 Most GP practices in UK using GSF basic level Stage 1 – QOF Foundation GSF Level 95% practices – QOF pall care points - mainstreaming (register and planning meeting) But….need to build on current GSF to meet 4 challenges Consistency, Effectiveness, Equity for non-cancer pts, Quality Stage 2 Next Stage GSF Primary Care - June 09 ‘Going for Gold’ distance learning programme

b) GSF Care Homes “the biggest, most comprehensive end of life care training programme in the UK” RNHA Training Over 2000 care homes trained Phased programme Structured curriculum - workshops +DVDs Learning outcomes linked to standards Work based changes – action plans Includes ACP training Accreditation Up to 200 /year accredited Rigorous process Consistency of practice Findings go to independent panel Awards Presentation twice a year

20 Key standards- Accreditation checklist Leadership + support Team-working Documentation Planning meetings GP Collaboration Advance Care Planning Symptom control Reduce hospitalisation DNAR +VoD policies Out of hours continuity Anticipatory prescribing Reflective practice+ audit Education + training Relatives Care in final days Bereavement Dignity Dementia Spiritual care Sustainability

Decreased hospital admissions and deaths with GSFCH Training programme as measured by ADA phases 4-6 Halving hospital deaths Potential Cost Savings – estimated £30-40k/ care home/ year - £1-2 m / PCT area

c). GSF Acute Hospitals Using GSF principles adapted for hospitals/wards Pilot Phase 1 2010 (15 hospitals) Phase 2 April 2011 (10 hospitals) Cross boundary care and in-patient care Evaluation shows Improved confidence and awareness of staff Earlier recognition and better planning Coordination of care -Improved cross boundary working with GPs More using LCP and ACP

d) GSF Domiciliary Care Programme Part 1 -covered at Workshop 1 Introduction to End of Life Care , GSF and this programme Identifying people nearing the end of life What do people want - advance care planning Supporting carers Cross boundary collaboration Part 2- Work based learning What do people need- Clinical skills guidance 4 case histories Frail elderly Dementia Organ failure Dying Part 3 -covered at Workshop 2 How does this feel? ‘ Its not OK not to care’ Loss and bereavement , spiritual care Continued learning and sustaining good practice

Integrated Cross boundary care GSF Primary Care GSF Domiciliary Care GSF Acute Hospitals GSF Care Homes

Better Together Sessions with GPs and Care Homes Key aim of GSF is to improve collaboration with GPs Workshop sessions + exercises Better collaboration and communication both sides

Support in line with needs- GSF helps identify people earlier and meet their needs Months Weeks Days

New Guidance out soon General indicators of decline Comorbidity increasing- Complex symptom burden Decreased functioning eg Karnowski- bed bound Weight loss Deterioration plus decreased response to treatment, decreasing reversibility Decline further active treatment Sentinel event Additional factors eg fracture, nursing home admission, bereavement

Gold Patients ! Patients know they are on the ‘gold’ register Encouraging + means best care Better coordinate care in line with preferences

Benefits to Patients of Cross Boundary GSF GSF Patients Out of Hours flagged up as prioritised care passed on to doctor to phone back within 20 mins visit more likely if needed Hospital GSF patient flagged on system collaboration with GP and GSF register noted on readmission to hospital and STOP THINK policy and ACP car park free? ? open visiting Care Home care homes staff speak to hospital staff daily updating ACP & DNAR noted and recognised referral letter recommends discharge back home quickly Primary Care advance care plan – preferred place of care documented proactive planning of respite always get a visit on request better access to GPs and nurses easier prescriptions prioritised support for patient and carers coding collaboration

Key Messages End of Life Care is important and affects us all - It includes everyone in your care home (not just the dying) Hospital deaths are expensive and often avoidable - too few people die at home/in their place of choice Improved working with GPs can help – RCGP is trying to help GSF helps improve GP collaboration - helps improve quality of care ,coordination and reduce hospitalisation GSF is used in many settings (care homes biggest training programme) – consider GSF as part of your training info@gsfcentre.co.uk