Ensuring that dying patients and their families receive good
End of Life Care
Andrea Hanson
Macmillan/STH
AMBER/End of Life Care Pathway Facilitator
April 2015
Aim of this session To identify and discuss the timeline of national events
relating to end of life care from November 2011 to the present time
Identify the key findings of ‘More Care: Less pathway’ report 2013
Identify and discuss the role of the Leadership Alliance for the care of dying people
Working in groups identify guidelines essential for addressing the five priority areas for achieving high quality care tailored to patients needs and wishes and delivered with compassion and competence
End of Life Care Strategy 2008
‘The route to success’ was a resource
for transforming end of life care in the acute sector.
This centred on 5 key enablers to achieve better end of life care; one being the Liverpool Care Pathway (LCP)
LCP background
Developed in 1997.. Based on the hospice model of care of the
dying Developed to reproduce the same quality of
end of life care in all care settings STH/St Luke’s Hospice version of the LCP is
‘The End of Life Care Pathway for last hours/days of life’ it follows the same principles as the LCP
A change in attitudes ………..
“ Liverpool Care Pathway to be
Scrapped” ‘LCP denies patients hydration and
food’
‘Mother put on pathway to death’
‘Family unaware father was dying’
‘130,000 elderly people put to death by the NHS’
What is your understanding of the concerns raised in the media about the Liverpool
Care Pathway?
Key Findings in the review of the LCP ‘More care:
less pathway July 2013
When applied correctly, the Liverpool Care Pathway does help patients have a dignified and pain free death and the panel support the principles of it
Key Findings continued; Absence of Independent prospective
testing of integrated end of life care pathways for end of life
Lack of clear definitions of terminology relating to end of life
Difficulty in diagnosing death
Misunderstanding of how to document in the LCP
Key findings (2)
LCP used as a tick box exercise
Evidence of falsifying records
Evidence of good and bad decision making
Confusion over consent issues
LCP in itself is not a single medical treatment requiring consent, some aspects are not medical treatments whereas others such as medicine changes are
Key Findings (3) Many cases where the LCP is used as a
tick box exercise
Too many serious cases of unacceptable care where the LCP has been incorrectly implemented
Patients left without adequate nutrition, hydration and were in-appropriately sedated
Key Findings (4)
Lack of/or poor communication with patients/relatives
Little evidence/research on the use of drugs to manage symptoms & distress
The professional guidance for clinicians on attempting resuscitation is not clear
The general belief that being on the LCP deliberately hastens death
Neuberger (2013)
• It is the way that the LCP has been misused and misunderstood that has led to such great problems, along with it being too generic in its approach for the needs of some people
• It is too late to reverse this and turn the clock back to get it used properly by everyone
• Recommend phasing out the LCP and replacing it with a more personalised care plan and a clinically sensitive approach
Leadership Alliance for the care of dying people
(March 20th 2014) Alliance members are committed to
ensuring that everyone who is in the last hours/days of life and those important to them, receive high quality care tailored to their needs and wishes and delivered with compassion and competence
Key points No National care pathway/ care bundle
Avoid tick box exercises
Good communication
Work in partnership with patient and those important to them to formulate a personal palliative care plan which is regularly reviewed
Clear documentation
References
Dept. of Health (2008) End of Life Care Strategy
NHS England July (2013)
Guidance for doctors and nurses caring for people in the last days of life. www.ncpc.org.uk/.../guidance-doctors-and-nurses-caring-people-last-days-life
July 2013. More Care Less Pathway: an independent review of the Liverpool Care Pathway
https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients
References continued
NHS England (Jan 2014) Joint statement by the leadership Alliance for the care of Dying People
NHS England (March 2014) Update from the Leadership Alliance for the care of Dying People