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Monday, 8 August 2016

Government commits to high quality end of life care

The government has made 6 commitments to the public to end variations in end of life care across the health system by 2020. These are:

  • honest discussions between care professionals and dying people
  • dying people making informed choices about their care
  • personalised care plans for all
  • the discussion of personalised care plans with care professionals
  • the involvement of family and carers in dying people’s care
  • a main contact so dying people know who to contact at any time of day  
  • The commitments are in response to an independent review of end of life care. Read more here

 The EEF View on End of life care as set in response to the NHS Constitution 2013

The Liverpool Care Pathway (LCP)

Our comprehensive response to the NHS Constitution would not be complete without reference to the Liverpool Care Pathway, (LCP). Although critically missing from this current version there is an understanding that it will include a section which says” patients have a right to a general say in their care will be toughened up to make clear they should be “involved fully” in “all discussions and decisions” about their care; “and that people should be given special support to help them take it in makes clear: “Where appropriate this right includes your family and carers.

How far this will go to dispelling people’s real fears about the underlying root and cause of the LCP, where too many cases were shown to have been put on the pathway without a proper explanation, or their families being involved, remains to be seen.

But, the whole situation requires much more transparency and any scrutiny must be thorough enough to give real closure to those that have grieved because of appalling health care practices. Especially since workloads are likely to increase because of an aging population, changes within the NHS, and specialists in the field are now so overworked, that they have no time for professional training. 

The overall consensus is, that people who are charged with the care of people in end of life pathways, do not really understand the LPC, and are confused how to provide a proper structured care. This promotes that, as people are not receiving as much comfort as possible to minimize their physical pains when they are dying, the NHS does not really understand how they will get this right.

Its pathways are reliant on a framework for good practices. However but care must be delivered  communicated and assessed within the organisational governance  framework, and as  there are no true benchmarks for any care, it is especially concerning that there appears to be none universally for LCP care.

The Marie Curie Palliative Care Institutes 2010 quoted:

“The LCP are only as good as the people using it”
A more recent comment from Professor Irene Higginson, of Kings College London, sums up the LCP current position rather well:


“What we don’t know really, is whether it is the way that the LCP is being used and the environment that is in, or whether it is something within the LPC which has confused people, or made them use it in a away which doesn’t work so well”.

Therefore it must be a number of questions that now have to be asked, regarding the fabric of care in the LPC, and its ability and suitability to provide adequate and suitable end of life, before any pledges are structured within the NHS Constitution:

a)      Who will educate and train staff to give compassion and kindness? It would appear that there is no consistency on what staff understand as a “good death”, which is making the dying person as comfortable as possible, to minimize their physical suffering.

b)       Will there be someone there to listen and act on the views of the families, when they stand watching their loved ones being neglected, when in the main, the NHS does not consistently deliver care at the right place and at the right time?

c)        Will the money invested in targets, suggested to between £20 million and £30 million paid out in the last two to three years to trusts which have hit targets, linked to the use of the LCP, really stop the culture of staff and bodies turning a blind eye on the appalling health care practices?

d)      Who is monitoring the wide variations in the standard of the LCP that has allowed it to sow the seeds of confusion, and fear amongst people in its care, and from recent reports, even doctors,

e)      Who will take the concerns surrounding the LCP seriously and investigate, get to the facts and take corrective action?

f)        Will there be any real closure for people dying prematurely as a result of being treated or mistreated under the LCP, be given to grieving families when NHS complaints system are not robust enough, and there is very little scrutiny? Especially as outcomes of “lessons learnt” “we have improved our systems” rarely appear to happen

g)       How will facts be established when families complain that something has gone wrong? Even if complaints are based on misunderstandings, then people need to know, to prevent dying people and their families any further pain and distress.

It is obvious that from recent media report and the concerns surrounding the care of the LPC that the focus for improving end of life care within the NHS Constitution, must reflect on the following:

a)      Why some people are now so reluctant, and frightened of going into hospital to get treatments, just in case they are put on the LCP.

b)      That it is not acceptable, that the recent audit by the Marie Curie Palliative Care Institute and Royal College of Physicians stated that half of those on the LPC –some 60,000 cases a year – are never told they are on such a pathway.

c)       That our professionals struggle to focus on the important aspects of care such as comfort, measure pain control, communicating with and supporting the sufferer, their families, carers and friends, when these are basic nursing skills.

d)      That our senior clinicians, with experience, appropriate training and with a multi-disciplined approach, need to be instructed to take into account the whole of the dying person’s needs. (Where is their psychology, social, medical and spiritual care when it should be- delivered in the right place, at the right time)?

e)      Why should there be better care in hospices than hospitals, and why do families feel their relative is less respected in hospitals than in the hospices? Regardless of where a person goes to die, the respect, dignity, empathetic and devoted care should always be paramount at end of life of every person’s life.

f)        Doctors and staff are expected to communicating effectively with the people in their care and their families. If they can’t speak frankly and sympathetically about death, and are not putting the LCP appropriately into practice, who is monitoring their clinical judgments?

g)       How will the NHS change people’s attitude when equally doctors and nurses themselves are over-defensive?

h)      That staff put people on the LCP without proper training, understanding how it works, and what people at the end of their life need in palliative care, makes a mockery of our laws, that assisted suicide is a punishable offence. 

i)        There should not be a lack of vigilance, skills and experience by staff looking after end of life people in their care, and their families. Who has responsibility for monitoring the ability and training of professionals, and the reductions in staff and staff turnover, for difficult and intensive care management?

j)        The LPC should never rely on tick box responses. It should be focused on real personal centered approaches to care, that addresses the individual needs of people at the end of their life.

k)      Why is it so difficult for staff to find enough time for that person and their families, and allow them to support each other, say their good byes and have that all important last good byes, in the best possible way? 

l)        Why are people dying prematurely as a result of being treated or mistreated on the LPC?

m)    Where is the careful and unbiased evidence that exists to reach the truth, and how is it being looked at and who is dealing with it?

The whole theme within this response to the NHS Constitution, is the need for taking a step back from its present contents, and look at the real possibility of a creating the perfect opportunity to reform the whole NHS and Social Care, and get to the heart of care, for each individual person.

It needs to be more critical of not just why the LCP is failing people, but why the NHS Systems generally are failing people. How the NHS works, how it is scrutinized, what is fact, what is fiction, and what is happening, that is having an impact on the whole of care that is preventing it from delivery person centered care, and any measurable improved outcomes. If only it truly talks and listens to all the people that it embraces, in a language that everyone understands – kindness, we might yet have a NHS that is for us all.

It is obvious from the content of the whole NHS Constitution, with its reliance mostly on the words dignity, respect and compassion, to inspire people and to ensure that the quality of care is truly implemented and sustained throughout the UK, will only fail to deliver expectations. There needs to be very solid foundations, within the fabric of the NHS for these words to really mean something, and resonate with people that are in their care.

Headlines in the Telegraph 2nd May 2016

A national audit of dying patients has highlighted a failure by authorities to tell relatives of plans put in place for their loved ones.
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