End of Life Care

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• End of Life Care
• the challenge for us all.
• National Council SE Area Meeting
• May 13th 05
• Keri Thomas
  
• National Clinical Lead Palliative Care CSC and
  NHS EoLC Programme,
• GPwSI Eastern Birmingham PCT, Clin. Director
  Community Pall Care,
• Pan- Birmingham Palliative Care Network,
• Macmillan GP Advisor, Senior Clin. Lecturer
  Warwick University

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End of Life care

• Context
• Gold Standards Framework Update-
• Spread
• Development
• Measures
• End of Life Care for all
• Future challenge

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Companions on the Journey
? Michele Angelo Petrone
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The next stage Dame Cicely
SaundersWHO 2004 Palliative Care The Solid
Facts

• The time has now come for the next stage
  the introduction of palliative care into
  mainstream medicine to give relief but also
  choice to each individual and family.

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Dying matters

• Robin
• Next door neighbour aged 52
• March celebrated my book launch
• Diagnosed with Ca June
• Boxing day festivities
• Died at home Jan 11th
• No greater calling than caring for the dying

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1. Current Context In England

• Increasing integration of palliative care in NHS
• Increasing recognition of generalist palliative
  care and community care - GSF LCP
• NICE Guidance in Supportive and Palliative Care
• New GMS 2 Contract for GPs
• DoH 12 million for End of Life care Initiative
  via SHAs from Nov 04 for 3 years , supporting GSF
  
• House of Commons Select Committee Pall care-
  recommendation to disseminate GSF
• Focus on Care Homes
• Opportunity to plan new models of care

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What we know is important.

• Choice is important- Half our patients dont die
  where they choose- control and self determination
  valued
• Home Care -Most of final year of life is at home-
  With a limited increase in community care 50
  more patients with cancer could be supported to
  die at home
• Hospital stays and deaths should be reduced
• Inequity- Hospital death more likely for poor,
  elderly, women, long illness etc
• Planning -If plan care and discuss preference for
  place of care, more likely to happen-Do not
  achieve preferred place of death because- Carer
  resources/support, symptom control, experience of
  services,
• Silent majority- Non cancer pts, care homes etc
• Increasing urgency with demographic changes

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How well do GPs deliver palliative care
systematic review Mitchell GK Pall Med 2002
16457-464

• 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 best

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To enable more cancer patients to die at home we
need.

• Early continuous Advanced Care Planning for the
  end of life
• Empowering and support of pts and families
• Intensive, sustained coordinated home care
• Systematic Literature review -Gomes Higginson
  2005 (EAPC congress)

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2. Gold Standards Framework

• Aim
• is to develop a practice-based system to
  improve the organisation and quality of care of
  patients in the last year of life in the
  community.
• GSF summary
• 1 3 5 7

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Head Hands and Heart of Community Palliative
Care
HANDS - process/organisation - systems -
how to do it
HEAD - knowledge - clinical competence - what
to do

• HEART
• -compassion/care
• human dimension-why
• - experience of care

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Underlying assumptions of GSF

• Care for people who are dying is important!
• GPs and DNs want to give best care-GSF enables
  this
• Developed from primary care for primary care-
  fits real life
• Raise awareness of dying pts and measures
• Framework not prescriptive but kick start change
  creativity-Adapt and adopt- becomes standard
  practice -develop ownership- this is what we do
• Patient focussed- Proactive- Think of future pts
  needs
• Be part of larger national momentum-Share
  learning and ideas with others
• If it was you.

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The Gold Standard of end of life
care

• The care of ALL dying patients
• is raised to the level of the best.
• (NHS Cancer Plan 2000)
• Applications of learning
• from cancer pts to the
• other 3 out of 4 patients

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GSF in Community Pall Care

• Steps

3. Plan
2. Assess
communicate
1. Identify
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Goals of GSF

• Patients are enabled to have a good death
• 1) symptoms controlled
• 2) in their preferred place of choice
• 3) Safe secure with fewer crises.
• 4) Carers feel supported, involved, empowered,
  and satisfied.
• 5)Staff confidence, teamwork,
• satisfaction, co-working
• with specialists and communication better.

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7 Key tasks/ standardsThe 7 Cs

• C1 Communication
• SC Register and PHCT Meetings, Pt info, PHR,
• Advanced care planning (ACP) eg PPC
  
• C2 Co-ordinator
• Key Person, assessment toolls eg PEPSI COLA
• C3 Control of Symptoms
• Assessment, body chart, SPC ,ACP etc
• C4 Continuity Out of Hours
• Handover form OOH protocol
• C5 Continued Learning
• Learning about conditions on patients seen
• C6 Carer Support
• Practical, emotional, bereavement, National
  Carers Strategy

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SO WHAT!
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Reactive patient journey-MR B in last months of
life-

• GP and DN ad hoc arrangements-no PPOD discussed
  or anticipated
• Problems with symptom control-high anxiety
• Crisis call eg OOH-no plan or drugs available
• Admitted to hospital (?Bed blocks?)
• Dies in hospital -?over intervention/medicalised
• Carer given minimal support in grief
• No reflection/improvements by team/PCT
• ? Inappropriate use of hospital bed?

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GSF Proactive pt journey- Mrs W in last mths of
life

• On SC Register-discussed at PHCTmeeting
• DS1500 and info given to pt carer(home pack)
• Regular support, visits phone calls-proactive
• Assessment of symptoms-?referral to
  SPC-customised care to pt and carer needs
• Carer assessed incl psychosocial needs
• Preferred place of care noted and organised
• Handover form issued drugs issued for home
• End of Life pathway/LCP/protocol used
• Pt dies in preferred place-bereavement support
  Staff reflect-SEA, audit gaps improve care, learn

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Preferred place of death- Phase 4 Warwick
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Planning
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Measures Main Findings Phase 2 GSF

• Better identification and tracking of patients
• More notingattaining preferred place of death
• Better communication, teamwork and planning
  including co-working with specialists
• Fewer crises/admissions
• Better organisation consistency of standards
  eg use protocols, assessment tools, information,
  bereavement care , even under stress
• Better co-working with specialists- referrals
• Better quality care-fewer slip through net

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GSF Update- May 05

• Spread- update, the GSF Programme, support,
  resources mainstreaming and levels of adoption
• Developments- GSF Care Homes Phase 2 Pilot and
  other developments
• Measures- Evaluation and research

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1) Spread , mainstreaming and levels of adoption
of GSF

• Use of GSF
• About 2000 practices (a fifth of all practices)
• 66 PCTs
• Every SHA
• Scotland GSFS a fifth practices
• Northern Ireland a third
• Embedding
• Adoption levels, PCT Implementation plans
• Several using LES, New GMS from April 06
• Agenda for change, Nursing practice/ standards

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7 year GSF Support Programme
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GSF Supported Spread Cascade

• National team

GSF Project group
SHA, Ca Network
Co-ordinators
Facilitators
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National Policy NICE Guidance in Supportive
Care-generalist

• Key Recommendation 12
• ensure medical, nursing services and equipment
  are available 24 hrs a day
• Key Recommendation 13
• Primary Care mechanisms to ensure that needs of
  patients are identified, assessed and
  communicated. eg The Gold Standards Framework
• Key Recommendation 14
• needs of patients who are dying should be
  identified and addressed. eg The Liverpool Care
  Pathway for the Dying

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National Policy-

• House of Commons Health Select Committee 04
• NHS Modernisation Agency (CSC) NHS End of Life
  Care Programme
• RCGP
• Endorsement and badging
• Education
• Accreditation
• GP Contract - 23 points- hopeful for GMS2 in 06!
  LES- several examples eg Brighton, Mnt Vernon
• National Council for Palliative Care

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Co-operation partnership with
palliative care specialists, hospices, hospital
social care others

• Better co-working with specialists
• More appropriate referrals
• SPC attend meetings, plan
  assessment tools protocols
• Closer link with hospitals
• Integrate social care
• Bigger picture thinking and commissioning of
  local needs

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Specialist involvement in GSF

• Welcome !
• Contact Local GSF team/ Join future phases
• Support meetings
• Develop local interest group with GPs DNs
• Assessment tools
• Guidelines
• Educational input
• Protocols eg OOH
• Specialist advice
• Contribute ideas specialist input centrally

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Teamwork
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2) Developments a) GSFCH Care Homes

• 2003/4- GSF adapted for Care Homes
• ( use LCP and Advanced Care Plan)
• Phase 1 pilot-
• 12 care homes in 6 areas -May- Dec 04
• Working with National Council, Help the Hospices,
  Nat Care Homes Commission, Nat Assn Nursing homes
  etc
• Workshops, conf calls and feedback visits
• Report March 05
• Phase 2 pilot-
• June 05- Feb 06
• about 100 care homes with 34 facilitators/
  project areas
• Some using LCP all using Advanced Care plans
• Launch June 9th 05 Birmingham
• Meetings Sept, Dec, Feb 06
• Final report Good Practice Guide to be
  produced April 06
• Lead Care Homes Nurse
• Research study Birmingham University funded by
  Macmillan

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b) Non cancer

• Link with Heart Collaborative COPD
• Renal
• Neuro eg MND
• Other organ failure
• Dementia
• Elderly and Frail

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c) Advanced Care Planning examples- to be used/
adapted

• Preferred place of care death - PPC/D
• DNR/CPR discussed (Allow Natural Death)
• Proxy- who else involved /(EPOA)
• EoL Care Plan - open
• - what matters to pt/ carer
• - what to do and what not to
  do
• What to do in a crisis
• Others eg organ donation/ special instructions,
  legal matters

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d) Education

• Need head as well as hands
• Local educational courses
• Princess Alice Course in Essentials in Palliative
  Care (8 week distance learning accredited course
  for generalists)
• RCGP support for accessible education

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e) End of Life Care Pathway

• From diagnosis to death ( bereavement)
• Follow pt journey across all settings
• Pilot in Birmingham across 4 hospitals, 7 PCTs,
  400 GP practices
• use of 3 assessment tools
• Patient held record electronic tool
• Evaluation Birmingham University Care Pathway
  Variance tools
• Link with other centres

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End of Life care pathway- GSP

• Diagnosis
• Hospital
• Assessment tools Home
• Pt held record
• IT communication Rx admission
• Crisis
  admission
• Home/
  Hospice/Care Home
• Hospital
• Death

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3) Measures

• Summary of evidence findings
• GSF Evaluations
• Warwick Macmillan GSF Evaluation team 2003-4
• Birmingham University Evaluation 2005-7
• Other Universities in Macmillan RE group
• Research eg qualitative
• SHA measures-
• Spread- SHA registration of GSF practices
• Questionnaire- modified for Phase 8

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For more information on GSF

• info_at_goldstandardsframework.co.uk
• www.goldstandardsframework.nhs.uk
• 0121 465 2029
• GSF Care Homes
• Charmaine.newell_at_easternbirminghampct.nhs.uk
• 0121 465 2028
• Radcliffe Book Caring for the Dying at Home
  Companions on the Journey Thomas K. 2003
• Keri.Thomas_at_btinternet.com

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3. End of life careLooming epidemic of need
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Why are we leaving it to luck?Joanne Lynn-US
Collaborative on improving end of life care
-Institute of Healthcare Improvement

• What will we need when we have to live with a
  fatal disease?
• We need reliability
• We need a care system we can count on
• To make excellent care routine we must learn to
  do routinely what we already know must be done
• All that it takes is innovation,
  learning,reorganisation and
• commitment

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Demographic time-bomb We have not been here
before!

• Then- 1900
• Life expectancy 49
• Die of infection accident childbirth
• Now- 2000
• Life expectancy 78- 15 over 65
• 70 over 65 men live as a couple but only 40
  women
• Fewer carers- children professionals
• More living with long term illness
• Die of organ failure, cancer, dementia
• By 2020
• 20 population over 65 (12.4 m)
• Number of over 80s increase by half
• Numbers of over 90s double
• Ratio of working to retired fallen from 71 to 4
  to 1

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Health Status of the Population(a conceptual
model)
Chronic Illness consistent with usual role
need acute and preventive care
Healthy Need acute and preventive care
Chronic, progressive, eventually fatal
illness Need variety of services and
priorities 1-2 lt65 yo, 3-5 gt65 yo
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End of Life Care definition

• Patients with chronic progressive eventually
  fatal illness in need of End of Life Care
• Diagnosed with the condition from which they will
• eventually die
• Ante- mortal parallel with antenatal/ early
  life care
• Includes organ failure, ca, CVA, dementia, etc.
• Overlaps with long term conditions (LTC)
• Complements Palliative care and Supportive
• care concepts (terminal phase is last
  few days)

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GPs Workload- Causes of death Context- 20
Deaths / GP / yr
5-7 Organ failure
5 Cancer
A
1-2 Sudden death
6-7 Dementia,frailty and decline
B
C
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• Cancer Trajectory, Diagnosis to Death

High
Cancer
Possible hospice enrollment
Function
Death
Low
-- Often a few years, but decline usually lt 2
months
Time
Onset of incurable cancer
48

• Organ System Failure Trajectory

High
(mostly heart and lung failure)
Function
Death
Low
2-5 years, but death usually seems sudden
Begin to use hospital often, self-care becomes
difficult
Time
49

• Dementia/Frailty Trajectory

High
Function
Low
Death
Time
Quite variable - up to 6-8 years
Onset could be deficits in ADL, speech, ambulation
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Choice preferred and actual place of death
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Place of death Higginson I (2003) Priorities for
End of Life Care in England Wales and Scotland
National Council

• Place Home Hospital Hospice
  CareHome
• Preference 56 11 24 4
• Cancer 25 47 17
  12
• All causes 20 56 4
  20

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Ca and HF survival rates-
One year survival rates, heart failure and the
major cancers compared, mid-1990s, England and
Wales
NYHA lll/lV
53
Estimate of lifespan distribution of costs
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Community provision affects hospitalsHospital
standard mortality rate) IHI Jarman 22 Matrix

• ICU
  Ward
• Comfort Care UK 2 36
• USA 2.4
  13.7
• 10
  52
• Standard care 36 47

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4. Challenges and Future plans- your thoughts

• A good death for all
• Our aim is that every person should be able to
  live well and die well in the place and in the
  manner of their choosing

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What if?Imagination is more powerful than
knowledge
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EoL Care plan

• Where are we now?
• How do we get there?
• Where do we
  want to be?

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How ?... Ensuring the best end-of-life care- 5
stages
5.Any time- OOH support from diagnosis
4.Any place- Care Homes, hospitals Comm.
hospitals, hospices
3.Any patient- Cancer non-cancer patients eg HF
pts

• 2.Any pt/carer
• Informed,empoweredenabled

1Any clinician Framework for generalist
supportive care-GSF LCPhands Education-
head
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Why do it?Ensuring the best for dying patients

• Better care for the dying should become a
  touchstone for success in modernizing the NHS
• (Sir Nigel Crisp March03)
• Our aim is that every person should be able to
  live well and die well in the place and in the
  manner of their choosing
• Dying well is the norm-
• a bad death is no longer tolerated in todays
  NHS
• What if it were you .. the Dr- family index?

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Companions on the Journey

• Never doubt that a small group of thoughtful
  committed citizens can change the world.
• Indeed its the only thing that ever does
• Margaret
  Mead