1. Improving End of Life Care- how can we help ?
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

2. 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?

3. 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

4. 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.

5. 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

6. 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 year olds,
93% in 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

7. 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”

8. 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

9. English NHS Policy Developments in End of Life Care (EOLC)
NHS EOLC Programme 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

10. 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 -

11. 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

12. “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”

13. 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

14. 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

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

16. 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.

17. 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?

18. 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

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

20. 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

21. 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

22. 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

23. 1 GSF Training Programmes
GSF Primary Care
From 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 Over 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

24. 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 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

25. 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

26. 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

27. 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

28. c). GSF Acute Hospitals
Using GSF principles adapted for hospitals/wards
Pilot Phase (15 hospitals)
Phase 2 April (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

29. 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

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

31. 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

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

33. 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

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

35. 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

36. 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