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What is the End of Life Care Programme

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Title: What is the End of Life Care Programme


1
What is the End of Life Care Programme?
2
End of Life Care Programme (EoLC)
  • Aims
  • to provide sensitive, quality care for all dying
    patients, across all diseases, in all settings
  • so that more people receive their choice of
    care and die in their chosen place.
  • Command paper Building on the best 2003

3
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, cancer, CVA,
    dementia, etc.
  • overlaps with long-term conditions (LTC)
  • (J Lynn 2003)

4
Why are we doing this?Because
5
  • The data

6
Number of deaths in England
  • approx 530,000 deaths pa
  • cause of death
  • - 25 cancer
  • - 19 heart disease
  • - 14 respiratory disease
  • - 11 strokes and related disorders
  • - 31 other
  • 84 (448,307) of deaths are people 65 or over
    (ONS 2003)
  • Office of National Statistics summer 2004
  • Statistics relate to 2003

7
  • Social changes

8
Changing trends
  • life expectancy increasing
  • more older people living alone
  • more people living with multiple chronic
    conditions
  • more retired people
  • families
  • less experience of death and dying
  • death and dying is a social taboo

9
  • Findings tell us that we need to improve on the
    current service provided

10
Place of deathHigginson I (2003) Priorities for
end of life care in England,Wales and Scotland
National Council
  • Place Home Hospital Hospice Care Home
  • ..
  • Preference 56 11 24 4
  • Cancer 25 47 17 12
  • All causes 20 56 4 20

11
Why are patients and carers needs and choices
not always met?
  • professionals not eliciting their problems and
    concerns
  • service not available
  • patients and carers being unaware of the services
    available that might help them
  • professionals unaware of benefits of existing
    services and not offering access or referral
  • poor communication and co-ordination amongst
    professionals

12
  • Recent guidance, recommendations and initiatives

13
House of Commons, Health Select Committee report
on palliative care - 2004
  • Amongst many recommendations
  • raise the skills and awareness of all health care
    staff in palliative care whether they work in
    hospitals, care homes or the community
  • the involvement of professional bodies to make
    palliative care part of the core syllabus and
    continuing professional development.
  • to roll out the end of life care tools (LCP and
    GSF), and that local champions working in care
    homes, general practice and the community should
    be encouraged
  • the right to a good death is fundamental and if
    palliative care is to be achieved it will need to
    operate in a much more equitable way. It will
    need to be delivered strategically to find a way
    of overcoming the divide between health and
    social care

14
National Service Frameworks older people, renal
services, long-term conditions, coronary heart
disease, and the NHS Cancer Plan
  • All highlighted the importance of choice and an
    integrated health and social care approach to end
    of life care

15
Independence, well-beingand choiceA vision for
the future of social care for England 2005
(Social care green paper)
  • focus on improved quality of life, personal
    dignity choice and control
  • the rights of individuals to control their own
    lives with the risks of independence being shared
    with them and balanced openly against benefits
  • strengthening partnership working with PCT
    independent and voluntary sector
  • link up assessment processes between providers
  • emphasise of preventing problems
  • development of the workforce

16
Other initiatives
  • NICE supportive and palliative care (2004)
  • General Medical Services contract (GMS)
  • single assessment process
  • Community matrons
  • Mental capacity Act National council for
    palliative care publications

17
Other initiatives
  • Help the Aged, Dying in old age 2005
  • Commission for social care inspectorate
    recommending the abolishment of the terminal
    illness category
  • Your health, your care your say
  • Building on the best

18
  • Who has responsibility for the EoLC programme?

19
National leadership
  • Led by Professor Mike Richards
  • National cancer Director
  • and Professor Ian Philp
  • National Director
  • Older people and neurological conditions
  • 12 million over 3 years commenced Nov 04

20
Who supports the national leads?
  • Programme Director
  • Claire Henry
  • Clinical leads
  • Professor John Ellershaw
  • Dr Keri Thomas
  • Les Storey
  • Steering group
  • Membership comprise statutory and voluntary
    organisations

21
  • What do we want to achieve?

22
Outcomes
  • greater choice for patients eg place of care
  • decrease the number of emergency hospital
    admissions for patients wishing to die at home
  • decrease the number of transfers from care homes
    to hospital in last week of life
  • increase use of end of life care tools eg GSF,
    LCP, PPC/ACP and others to increase learning

23
Core principles
  • all dying people not just cancer patients
  • continue to build local capacity, capability and
    clinical leadership
  • change management - measurement and evaluation
  • knowledge management
  • develop an integrated approach for patients and
    carers
  • focus on local needs and priorities
  • time not a quick fix

24
Partnership working
SHAs, PCTs, acute trusts
professional/trade organisations
Department of Health
patients and carers
Care homes
clinical networks
voluntary sector
Educational Institutes
private sector
hospices
social care
Regulators CSCI
other initiatives
End of Life Care Programme
25
  • How are we going to try to achieve this?

26
  • skilling-up generalists in
  • Gold Standards Framework
  • Liverpool Care Pathway
  • Preferred Place of Care

27
The Tools
  • Gold Standards Framework (GSF)
  • aims to improve community based care for those
    with chronic and terminal diseases with an
    emphasis on continuity, communication and
    coordination of care
  • www.goldstandardsframework.co.uk

28
The Tools
  • Liverpool Care pathway (LCP)
  • Focussing on the end stage of a patients life
    (last 48-72 hours strives to provide pain free
    death, and tries to address the psychological and
    spiritual needs of patient and family at this
    time.
  • www.lcp-mariecurie.org.uk

29
The Tools
  • Preferred Place of Care (PPC)
  • helping to initiate and develop the sensitive
    conversation around preferred place of care and
    death between patient, carer and health care
    professionals to achieve a greater likely-hood
    of fulfilling the patients wishes
  • www.cancerlancashire.org.uk/ppc

30
Key components
  • identification
  • assessment of both patient and carers needs
  • include current and anticipatory
  • agreeing and implementing an advanced care plan
  • ongoing assessment
  • co-ordination
  • communication
  • education

31
Patient pathway
GSF/PPC
LCP
supportive and palliative care
deterioration
death/bereavement
Preferred Place of Care (PPC) Gold Standards
Framework (GSF) Liverpool Care Pathway (LCP)
32
Measurement and evaluation
  • continue to build the evidence base not just
    around the tools
  • GSF
  • baseline and 9-12 months after implementation
  • LCP
  • 20 baseline case reviews and 20 case reviews
    following implementation
  • continuous quality improvement programme
  • PPC
  • currently being developed

33
Roll out of tools
  • LCP
  • over 300 clinical settings nationally and
    internationally
  • GSF
  • over 2000 practices
  • PPC
  • 50 clinical settings including primary and
    secondary

34
The Future
  • Continue partnership working between
    professionals and users to improve end of life
    care for all

35
  • Website www.endoflifecare.nhs.uk
  • Email
  • information_at_eolc.nhs.uk
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