End of life issues in Primary Care Lincoln April 24th 09 Prof Keri Thomas National Clinical Lead GSF Centre,

1.  End of life issues in Primary Care Lincoln April 24th 09 Prof Keri Thomas National Clinical Lead GSF Centre, Hon Professor End of Life Care Birmingham University, RCGP Clinical Champion of End of Life care Chair Omega

2. Plan Context of End of Life Care and the challenge to primary care Update on GSF programmes -primary care, care homes Measures- PROMS ,ADA,National Primary Care Audit Future challenges and Next Steps

3. 1. ContextThe Big Challenge of the demographic time-bomb How are we going to be able to care well for all people nearing the end of their lives in the future?

4. Clarification of Terms End of Life care �Care that helps all those with advanced progressive incurable illness to live as well as possible until they die� Pts living with the condition they may die from- weeks/months/ years All 3 types of pt (cancer, organ failure ,frail elderly /dementia pts ) �Ante-mortal� care like ante-natal or early life care Supportive Care Helping the patient and family cope better with their illness not disease or time specific, less end stage Palliative care holistic care (physical psychological, social, spiritual ) specialist and generalist palliative care Some regard as overlapping or following curative treatment Terminal care/ Final days Diagnosing dying-care in last hours and days of life

5. Context- Generalist Community care  About 1% of the population die / year More complex as people live longer Commonest cause of death is multi-morbidity 85% deaths are over 65 Most end of life care is delivered by the usual healthcare provider � GP, DN, care home, ward staff Workforce- approx 2.5 million health and social care- 5,500 palliative care specialists Most people (estimated 70%) prefer to remain at home Only 35% home death rate � 18% home, 17% care home

7. Demographics of deathGomes and Higginson PallMed 2008 Dramatic rise in deaths from 2012 Key 3 years before death curve rises Deaths outnumber births 2030 People dying older- over 85s 32%in 2004 , 44% in 2030 Decreasing home deaths � now 18% -less than 10% by 2030- trend to hospitalization Communities- increase single occupancy households We have a few key years to plan now

8. How well do GPs deliver palliative care: systematic review Mitchell GK Pall Med 2002 16:457-464 GPs� contribution pts appreciate being listened to,allowing ventilation of feelings Being accessible Basic symptom control GPs deliver sound and effective pall care Best with specialist support Increasing exposure/formalised engagement

9. 5 Key factors in enabling home deathFactors influencing death at home in terminally ill patients with cancer: systematic review.Gomes, B and Higginson, I J. BMJ 2006: 515-518 Intense sustained reliable home care Primary care working optimally, Supportive care in the home Self care - public education Support for families and carers Advance Care planning- risk assessment Training practitioners

10. 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 focusVision 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

11. The biggest killers in UK (unofficial view- poor figures ) Multi-morbidity/ frailty Heart Failure Dementia Cancer COPD Stroke Chronic Kidney disease Neurological diseases Average life expectancy 79-82

12. Outcomes and Cost OUTCOMES NOW- about 50% not dying where they choose Many die poorly Weighted towards cancer patients- more die of HF+COPD COST Overspending on hospitals and unwanted treatments 30% rise in costs if stay same CONCLUSION With better planning and prevention of crises more could be expected to die at home/ where they choose Focus on community care and reduction of hospital admissions

13. Where are we now in Primary Care? Primary care teams changing Practice based commissioning + PBR QOF -registers for 6 killer disease incl.dementia GSF/ equivalent becoming mainstream- QOF Pall Care pts -register and meeting Darzi EOLC thinking in PCTs SHAs EOLC strategy July 08 RCGP End of life care strategy+ Clinical Champions � EOLC a priority

14. RCGP End of Life Care Strategy (draft) End of Life Care is a priority GPs + DNs have a special role Collaboration with RCN Link with care for pts with long term conditions �Quality is at the heart of what we do� 10 specific recommendations Passed by CEC- going to Council June 09

15. Multi- morbidity Intrinsic to primary care � specific RCGP CIRC workstream The �biggest killer� in the UK Multimorbidity defined as the co-existence of two or more long term conditions in an individual (Mercer et al, 2009). Recent study of family practices in Canada showed that multimorbidity is now �the norm� in family practice with prevalence rates of 61% in 18 to 44 year olds, 93% on 45 to 64 year olds and 98% in those over 65 years of age level of multimorbidity was an independent predictor of prognosis amongst patients with established cardiovascular disease

16. � The end of the disease era�Characteristics of Two Models of Medical Care Tinetti M, Fried T j.amjmed.2003.09.031 Disease-Oriented Model Clinical decision making disease focused Cause -discrete pathology Treatment is targeted at the disease pathology. Primary focus of treatment- �causative� disease Clinical outcomes are determined by the disease. Survival is the main goal Integrated, Individually Tailored Model Clinical decision making is patient focused Cause- complex interplay of factors Treatment is targeted at the patient�s modifiable factors Primary focus of treatment - symptoms and impairments Clinical outcomes are determined by individual patient preference. Survival is not the only goal

17. Example of different approach  Disease-Oriented Model Collect clinical data Diagnoses Management Outcomes Integrated, Individually Tailored Model Collect patient specific data Contributing factors impeding goals Management based on patient�s priorities Outcomes in order of patient�s preferences

18. 2. Update on the Gold Standards Framework Programmes What is GSF? A framework to deliver a �gold standard of care� for all people approaching the end of their lives A system- focussed organisational approach to optimising the care delivered by generalist healthcare professionals

19. The National GSF Centre

20. GSF is about� An ethos that this is important, we do it well but we can do it better Enabling and affirming generalists� home care Get behind peoples motivation to do this well Making it easy to do the right thing every time Optimising systematic consistent care Adaptable framework using well used tools Pre-planning care-focussed on current and future clinical and personal needs of patient and carers

21. GSF in Lincolnshire GSF Primary Care Long tradition of GSF 78 out of 102 practices signed up for LES � 24 not yet National Primary Care ADA Pilot site 2 yr plan- plans for training programme GSF Care Homes Ph 3,4,- 8 nursing homes Some Beacon homes Ph 5 � 28 homes Out of 80 N homes 200+ res homes Developing momentum

22. 2a GSF Primary care most GP practices using GSF basic level 1 GSF is recognised as the �bedrock of generalist palliative care��

23. GSF 3 Steps  identify, assess plan

24. 7 Key tasks C1 Communication SC Register, PHCT Meetings, PHR /care plan Advanced care planning (ACP) eg PPC C2 Coordination Identified coordinator for GSF, keyworker for patient C3 Control of Symptoms Assessment tools, body chart, SPC, ACP C4 Continuity Out of Hours Handover form + OOH protocol C5 Continued Learning Learning about conditions on patients seen, SEA / reflective practice C6 Carer Support Practical, emotional, bereavement, National Carer�s Strategy C7 Care in dying phase Protocol LCP / ICP

25. GSF Primary Care Programme What practices do   Palliative Care Register - QOF Monthly team meetings Nominate key-workers for each patient Symptom assessment Handover form sent to out of hours Support carers Further training / learning Anticipatory prescribing Care in final days protocol/ pathway Embed, sustain, develop -own materials, protocols, Home Packs etc Audit progress Better coordination of care

26. Successes with using GSF 1.Attitude awareness and approach � Better quality of care perceived Greater confidence and job satisfaction Immeasurable benefits- communication, teamwork, roles respected Focus + proactive approach, 2.Patterns of working, structure/ processes Better organisation + consistency of standards, even under stress Fewer slipping through the net- raising the baseline Better communication within and between teams, co-working with specialists Better recording, tracking of pts and organisation of care 3. Patient Outcomes Reduced crises/ hospital admissions /length of stay Some doubled home death rate, halved hospital deaths, decrease crises More dying in preferred place More recorded Advance care planning discussions

27. Gold Patients ! Patients know they are on the �gold� register Implies best care Encouraging if heard no more can be done for them

28.   2 b)The Gold Standards Framework in Care Homes  Training Programme   Goals 1. To improve the quality of end of life care 2. To improve collaboration with primary care and palliative care specialists 3. To reduce hospitalisation- numbers of hospital admissions, length of stay and increase home deaths

29. 3 stage processPreparation, training and consolidation + accreditation

30. GSFCH Accreditation�Going for Gold� 4 key elements Self Assessment Accreditation Checklist Portfolio of evidence ADA- after death analysis � 5 resident deaths Assessor Visit � by GSF Visitor Findings go to objective panel Awards Presentation twice a year

31. The GSF Care Homes Training Programme

32. Successes using GSF Care Homes Training Programme Open attitude to death and dying All residents have advance care plans Improved confidence of staff Better working with GPs Halving hospital death rates Reducing crisis admissions �GSF has made my work simple to care for my residents. It has drawn me closer to my residents and relatives, given me confidence in discussing end of life care.� (Nursing Home RN Accreditation Round 3 )

33. So what does this mean for you? Where are you with GSF? What are the current barriers and challenges for you? Suggestions for improvement of GSF Primary Care?

34. c) Other areas Public awareness Out-of-Hours providers GSF Prisons GSF Acute Hospitals GSF Children International

35. Other GSF tools

36. GSF Prognostic Indicator Guidance- identifying pts with advanced disease in need of palliative/ supportive care/for register Three triggers Surprise question- would you be surprised if the pt was to die within 1 year Patient preference for comfort care/need Clinical indicators for each disease area eg Ca metastases, NY Stage FEV1, Karnowski, etc

37. Needs Support Matrix

38. Advance Care planning

39. GSF - Advance Care Planning

40. What if �.Mr Bloggs  Current Ideal Increasing crisis admissions to hospital Symptoms worsening Ad hoc visits -no future plan discussed Wife struggling to cope unsupported No life closure discussions,DS1500, respite etc Worsens at weekend - calls 999-Paramedics attend A&E- 8 hour wait on trolley Admitted to hospital-dies on ward- alone Wife given little support in grief No reflection by teams ? Inappropriate use of hospital Identification PIG Assessment of Needs- NS Matrices Advanced care planning -ACP Planning -regular support +Coordination within primary care � GSF Support at home- RR/Homecare team Handover form out of hours-GSF Crisis Admission averted � GSF + others High quality inpatient care Dies at home/ hospital ICP/LCP Bereavement care- GSF Audit (ADA),reflection+ improvement GSF Better outcome for patient, family Most cost effective + best use of NHS

41. 3. Measures- how do we know how we are doing? Local audits + Significant Event Analyses ADA- After Death Analysis National Primary Care Audit in EOLC Carers� views Staff confidence PROMS- Patient Reported Outcome Measures Others

42. An example in the community  Online After Death Analysis Audit Tool ADA measures patient outcomes eg place of death, preferences, use of services etc Comparative- before and after Benchmarking

43. National Primary Care Audit in End of Life Care- current First ever national audit of end of life care in primary care Easy to use online tool Includes ALL deaths in Feb and March 2009 Includes ALL practices in PCT area National sample to benchmark current care Using ADA and GSF Reports due Oct 08 Partnership between: Local practices and PCTs Department of Health Omega, National GSF Centre, The Evidence Centre, and the University of Birmingham

45. Key Topics Covered Patient choice Numbers dying where they choose Reasons might die elsewhere Hospitalisation Hospital days and crisis admissions (aim to reduce hospitalisation with better care) Pre-planning Anticipating palliative care needs early Including people on a register Including non cancer patients. Local services Use of and gaps in service provision (supports commissioning) Systematic Are all aspects of care covered

46. Hogarth�s view on PROMs

47. Take Home messages This is important. This affects us all. The challenge of end of life care is too big to do alone- need optimal working of generalists and specialists � one of the greatest challenges we face End of Life care provided by primary care and care homes is important and can be excellent. The trend towards long term conditions ,multi morbidities and frailty GSF has helped to change community palliative care in the UK � used in primary care, care homes etc, now mainstreamed � to improve further How do we know we are making progress? what are the measures in end of life care? Catch the vision Reframe our thinking - Care for people nearing the end of life is a measure of our success not failure. We need to get this right for us and our children- legacy of baby boomers?

48. So what does this mean for you? Where are you with GSF? What are the current barriers and challenges for you? Suggestions for improvement of GSF Primary Care? How can we meet the challenge of end of life care?

49. Thank you