The End of Life Care Programme
Adrienne Betteley
End of Life Care Programme Lead
Merseyside and Cheshire Cancer Network
Most people would prefer to
die at home
The majority die in an acute setting….
It helps to have some foundations to build upon!
End of Life Care Strategy Context
• First ever national strategy on end of life
care
• Developed in parallel with the Next Stage
Review
End of Life Care Strategy
The Strategy
• covers all conditions
• covers all care settings (eg
home, hospital, hospice,
care home, community
hospital, prison etc)
• has been developed within
the current legal
framework
End of Life Care Strategy
Aims:
• To bring about a step change in quality of
care for people approaching the end of
life
• To enhance choice at the end of life
• To deliver the Government’s manifesto
commitment to double investment in
palliative care
Chapter 1
Chapter 8
The challenges of
end of life care
Making change
happen
Chapter 7
Measurement
and research
Death, dying
and society
End of Life
Care
Strategy
Chapter 6
Workforce
Chapter 2
Chapter 3
The end of life care
pathway
Chapter 4
Chapter 5
Support for
carers
and families
Care in
different settings
The End of Life Care Pathway
Step 1
Step 2
Discussions
as the end
of life
approaches
Assessment,
care planning
and review
• Open, honest
communication
• Identifying
triggers for
discussion
• Agreed care
plan and
regular review
of needs and
preferences
• Assessing
needs of carers
Step 3
Coordination
of care
• Strategic
coordination
• Coordination
of individual
patient care
• Rapid
response
services
Step 4
Delivery of
high quality
services in
different
settings
• High quality
care provision
in all settings
• Acute
hospitals,
community,
care homes,
hospices,
community
hospitals,
extra care
housing
prisons, secure
hospitals and
hostels
• Ambulance
services
Spiritual care services
Support for carers and families
Information for patients and carers
Step 5
Care in the
last days
of life
• Identification
of the dying
phase
• Review of
needs and
preferences for
place of death
• Support for
both patient
and carer
• Recognition of
wishes
regarding
resuscitation
and organ
donation
Step 6
Care after
death
• Recognition
that end of life
care does not
stop at the
point of death.
• Timely
verification and
certification of
death or
referral
to coroner
• Care and
support of carer
and family,
including
emotional and
practical
bereavement
support
Summary
• The strategy sets out a vision to transform
end of life care in this country over the
coming years
• Action is now be taken by a very large
number of people and organisations who
contribute to commissioning, delivery of care,
education and research
The Political Map !
Review – Life Cycle (8 groups)
End of Life Care Strategy
End of Life Clinical Working Group
Framework
?
Extended to
other 9 SHA’s
US !
Healthier Horizons for
the North West
11 recommendations
MCCN Programme 2009-2012
• Programme devolved to the Cancer Network
• In line with the 11 recommendations from
Healthier Horizons
http://www.northwest.nhs.uk/healthierhorizons/
Key issues – End of Life
• Establishing advance care planning systematically
• Enabling patients who wish to die at home to do so
• Establishing a supportive palliative care register across
settings
• Development of joint commissioning/funding
• Establishing integrated information systems
• Equity of access for bereaved relatives for support
Patient Pathway
Review
Identify
needs
Assess
need
Implement
Plan
1 year +
Advancing
disease
1 year +
Increasing
Morbidity
Last Days
of Life
GSF/PPC
LCP
Preferred Priorities for Care (PPC)
Gold Standards Framework (GSF)
Liverpool Care Pathway (LCP)
First Days
of Death
Bereavement
NHS - End of Life Tools
End of Life Care Strategy
1
2
3
Preferred Priorities for Care
www.endoflifecare.nhs.uk
www.endoflifecareforadults.nhs.uk
Advance Care Planning
Advance
care planning
Statement of
wishes and
preferences
Advance
decisions
Lasting power
of attorney
Process
•
•
the process is voluntary
the content of any discussion should be
determined by the individual concerned
Competency framework
Advance
decisions/stat
ement of
wishes
Facilitate ACP
discussions/statement
of wishes
Preferred Priorities for Care
(formerly known as Preferred Place of Care) (PPC)
What is it?
• An advance care plan for people with a life
limiting illness who wish to have their choices
and preferences recorded in relation to their
care and ultimate place of death
• A patient held record which should go with
the patient if they are transferred to a different
care setting
Background to the PPC
• Originated in Lancashire & South Cumbria
Cancer Services Network 2003
• Recommended by Department of Health End of
Life Care Programme
• Used in variety of settings for patients with lifelimiting conditions
Positives of Implementing
•
•
•
•
•
•
Empowering for patients
Opens up vital discussions
Promotes choice
Excellent way of lobbying for further resources
Helps prevent inappropriate transfer to another setting.
Builds staff confidence and encourages difficult
conversations
The new PPC document
• Change from Preferred Place of Care to Preferred
Priorities for Care
• Patient-held advance care plan
• Only to be used for those who have mental capacity
• Allows patients to consider, discuss and document their
preferences and priorities for care as they approach the
end of life
Support
• Not everyone finds it easy to have conversations
about death and dying
• Staff may need additional support through
communication skills training or through mentor
or peer support – may be a Specialist Palliative
Care Nurse
Gold Standards framework
http://www.goldstandardsframework.nhs.uk
Aim of GSF
• 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
Gold Standards Framework
• Better organisation of care for some of the most needy
patients
• Better teamwork and practice morale
• Fewer crisis calls and admissions with more proactive
care
• Better quality of care for patients in the last year of life at
home
• More patients enabled to die well in their place of choice
The Key Tasks or 7 Cs
•
•
•
•
•
•
•
Communication
Co-ordination
Control of symptoms
Continuity out of hours
Continued learning
Carer support
Care of the dying
GSF is About
• Planning ahead
• Anticipatory care helps
avoid crisis and can
enable:
– Improved support for
families and nursing teams
– Reduction in hospital
admissions
– Achievement of preferred
place of care
Liverpool Care Pathway
Care of the Dying Audit
• NATIONAL AUDIT SHOWS DYING PATIENTS
RECEIVE HIGH QUALITY CARE SUPPORTED BY
THE LIVERPOOL CARE PATHWAY FOR THE DYING
PATIENT (LCP). The second National Care of the
Dying Audit of Hospitals (NCDAH) published 14th
September 2009, shows that patients on the Liverpool
Care Pathway for the Dying Patient (LCP) are receiving
high quality care in the last hours and days of life. The
audit covers the use of the LCP in 155 hospitals, looking
at the records of almost 4000 patients.
New Version
• Version 12 LCP will be launched at the LCP
Conference 25th November 2009 at the Royal
Society of Medicine - London.
www.lcp-mariecurie.org.uk
How we measure the uptake of the EOLC tools in
MCCN
•
•
•
•
Data collection tools used across sectors
Level Descriptors
Death data (ONS)
Quality Markers
Example of data collection tool
Level Descriptors
Level
0
The organisation has not implemented the specific EOLC tool
Level
1
The organisation has plans in place for the implementation of the specific EOLC
tool
Level
2
The organisation is in the early phase of implementation of the specific EOLC tool
Level
3
The organisation is able to demonstrate implementation of the specific EOLC tool
Level
4
The organisation has embedded and sustained the specific EOLC tool.
MCCN Targets
Quality Markers as a way of
measuring for the future
Dying Matters
“to support changing knowledge, attitudes and
behaviours towards death dying and
bereavement, and through this to make ‘living
and dying well’ the norm”.
MCCN – Dying Matters Campaign
Promoting healthier attitudes to
the end-of-life makes sense
Contact details
0151 201 4150
Adrienne.Betteley@mccn.nhs.uk