END OF LIFE CARE
PALLIATIVE CARE CONFERENCE
14TH MAY 2014
Rachel Bond
Macmillan Palliative Care Clinical Nurse
Specialist
Sheffield Teaching Hospitals
THINK FOR A MINUTE ABOUT END OF LIFE
CARE.

What comes to mind ? ……….
POSSIBLE SUGGESTIONS

Specialist palliative care.

Hospice or palliative care unit.

End of life care pathway (EoLCP).
WHAT SHOULD COME TO MIND ? ……

EVERYONE’S BUSINESS.

One certainty for all.

One chance to get it right.

Everyone here today cares for dying patients.
HISTORY OF LIVERPOOL CARE
PATHWAY (LCP)




Developed in 1997 by Marie Curie Palliative Care
Institute, Liverpool (MCPCIL)
Based on a hospice model of care of the dying.
Idea was to enable replication of hospice care in
any care setting.
END OF LIFE CARE PATHWAYS




Based on guiding principles of LCP.
Enabled organisations to develop a pathway that
met their patients needs.
Enabled organisations to take ownership of the
pathway.
STH End of Life Care Pathway for the last
hours/days of life.
WHERE DID IT ALL GO WRONG ? ……

Lack of engagement in end of life care.

Inappropriate use of the pathway.

Extensive negative media coverage

POOR COMMUNICATION.
MEDIA QUOTES

“Mother put on pathway to death”

“LCP denies patients fluids”

“LCP helps us to free up beds says Dr”

“A pathway to legal execution”
MORE CARE, LESS PATHWAY 2013
Baroness Neuberger was commissioned by
government to undertake an independent review
of end of life care pathways following significant
negative media coverage about poor end of life
care and pathways.
 Evidence was sought from the public, HCP’s,
professional bodies.
 A review of academic literature.
 A review of hospital complaints.
 A survey of HCP’s.

MORE CARE, LESS PATHWAY 2013

“ When applied correctly the LCP does help
patients to have a dignified and pain free death
and the panel supports the principles of it”
KEY FINDINGS

Tick box exercise.

Lack of clear definition of terminology.

Difficulty in diagnosing death.

Misunderstanding of use of EoLCP.
EVIDENCE OF:

Falsifying records.

Good and bad decision making.

Too many serious cases of unacceptable care.

eg. Too many examples of patients being denied
food or fluids.

“It is the way the LCP has been misused and
misunderstood that has led to such great
problems, along with it being too generic in it’s
approach
NHS ENGLAND JULY 2013



Guidance for Nurses and Doctors on care of the
dying patient and their family.
Produced in direct response to Neuberger report
(2013)
Guidance advised that dying people should
continue to receive good end of life care.
LEADERSHIP ALLIANCE FOR THE
CARE OF DYING PEOPLE (LACDP)

Formed in October 2013.

Formed and led be Dr Bee Wee.

A coalition of national organisations, charities
and others with a strong interest in end of life
care.
LACDP COMMITMENT

“To ensure that everyone who is in the last hours
or days of life, and those important to them,
receive high quality care, tailored to their needs
and wishes and delivered with compassion and
competence”.
LACDP KEY POINTS
There will not be a national tool to replace LCP.
 Focus will be on what care should be like, not
protocols and tick boxes.
 Professionals are expected to demonstrate
attention to FIVE priority areas.
 Service providers & commissioners are expected
to create & support systems, & learning &
development opportunities to make this happen.

LACDP FIVE PRIORITY AREAS
No hierarchy.
 All to be seen as equally important.
 Implementation guidance to be made available.
 End of life care will be one of eight core service
areas to be inspected by CQC.

PRIORITY AREA ONE
The possibility that a person may die within next
few hours/days is recognised and clearly
communicated.
 Decisions made and actions taken are in
accordance with a person’s needs and wishes.
 These are regularly reviewed.

PRIORITY AREA TWO

Sensitive communication takes place between
staff and the person who is dying and those
identified as important to them.
PRIORITY AREA THREE

The dying person and those identified as
important to them are involved in decisions about
treatment and care to the extent that the person
wants.
PRIORITY AREA FOUR

The needs of families and others identified as
important to the dying person are actively
explored, respected and met as far as possible.
PRIORITY AREA FIVE

An individual plan of care, which includes food
and drink, symptom control, psychological, social
and spiritual support is agreed, coordinated and
delivered with compassion.
AWAITED FROM LACDP SUMMER
2014…..
A document which will:
 Set out what dying people & those important to
them should expect.
 Include a statement of responsibilities of health
& care staff to meet five priority areas.
 Provide implementation guidance for service
providers & commissioners.

A FINAL THOUGHT……
When you are next on duty what are you most
likely to deal with:
 A fire ?
 A dying patient & their family ?


Which of these do you receive regular updates &
training for ?....................
REFERENCES
LACDP (2013) Engagement with patients’
families & carers. NHS England.
 NHS England(2013) Guidance for nurses &
doctors in caring for people in the last days of life.
 Neuberger (2013) More care, less pathway. A
review of the Liverpool Care Pathway.
 Sheffield Teaching Hospitals (2011) End of life
care pathway, last hours to days of life. Version
4.

LACDP Membership
The alliance is chaired by NHS England. Other
members include:
 CQC, College of Health Care Chaplains, GMC,
General Pharmaceutical Council, Health
Education England, Macmillan Cancer Support,
Marie Curie Cancer Care, NICE, NHS Improving
Quality, NMC, Public Health England, Royal
College of GP’s, RCN, Royal College of
Physicians, Sue Ryder Care.
