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