What is the End of Life Care Programme

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What is the End of Life Care Programme?
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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

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

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Why are we doing this?Because
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• The data

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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

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• Social changes

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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

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

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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

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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

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• Recent guidance, recommendations and initiatives

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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

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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

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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

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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

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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

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• Who has responsibility for the EoLC programme?

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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

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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

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• What do we want to achieve?

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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

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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

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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
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• How are we going to try to achieve this?

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

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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

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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

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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

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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

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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)
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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

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Roll out of tools

• LCP
• over 300 clinical settings nationally and
  internationally
• GSF
• over 2000 practices
• PPC
• 50 clinical settings including primary and
  secondary

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The Future

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

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