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:
Quote:
“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
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