ARGUMENTS over the implementation of the Liverpool Care Pathway
(LCP) in hospitals have been so insistent of late that a review has
been been ordered by the Health Minister, Norman Lamb. It is being
chaired by Baroness Neuberger, and it should be published this
year. But what is the LCP, and why has it engendered such fuss?
As the independent hospice movement was coming of age, more and
more people began to ask questions about the experience of dying in
hospitals. The independent hospice movement had shown, to the tiny
section of the population that it could accommodate, that
compassionate, multi-disciplinary attentiveness could enable death
to be a positive experience, both for patients and their
carers.
In the late 1990s, the Marie Curie Hospice in Liverpool, and the
Royal Liverpool Infirmary collaborated on a project that would help
hospitals to change the way that the majority of us die.
They produced a tool called the Liverpool Care Pathway, which
would encourage hospitals to stop treating a dying patient
"aggressively", and allow death to happen as naturally and
painlessly as possible. The tool prompts staff to question how they
are to manage the patient's pain, agitation, respiratory-tract
secretions, nausea and vomiting, and shortness of breath, as well
as addressing wider care needs, such as communication with the
family, the wider psycho-social team, and chaplaincy.
SINCE its introduction, it has been refined several times. It
has been approved by the National Institute for Health and Care
Excellence (NICE), and so far has been implemented in 85 per cent
of NHS Trusts.
Surveys of doctors and nurses report a perceived improvement in
the way that dying patients are treated in hospital, but there has
been a storm of protest, reported in the press, which has suggested
that it is both badly implemented and intrinsically flawed.
The suggestion that the LCP is "euthanasia by the back door" has
been heightened by the fact that implementing the LCP is one way in
which trusts may earn money under a system known as "Commissioning
for Quality and Innovation".
Jargon may be another reason why journalists and families find
the LCP suspicious, or even wickedly euphemistic. In NHS-speak, a
"tool" is not an instrument to effect something, but rather a
checklist to try to ensure consistent, objective, equal treatment
for all patients, although they are being treated by different
staff whose own approach may vary according to energy,
distractions, etc. (Some have even devised "spiritual assessment
tools", for what they're worth.) "Pathway" also sounds sinister to
some, though it is common NHS-speak to describe any patient's
trajectory through illness and treatment.
ONE criticism levelled at the LCP is that in order to implement
it in individual cases, there first has to be a decision that a
patient is beyond hope of recovery. Which of us has the right or
the expertise to predict someone's death? My observation is that
doctors and nurses are the first to admit that this is a very
difficult thing to do.
On the other hand, as organs begin to fail, there are often
signs that the patient is dying. At this point it may be more
compassionate to withdraw artificial nutrition or hydration, if the
body's organs can no longer deal with food and fluids. It may also
be compassionate to increase the dosage of pain-killing drugs, even
at the cost of shortening someone's life. Using the LCP is a prompt
to "go with the flow" at the pace dictated by the patient. There is
also a built-in prompt to consider that the patient may be
recovering - and recent surveys indicate that some three per cent
of patients have been taken off the LCP, at least for a while.
ONE of the bitterest criticisms of the LCP has been that it is
implemented without consultation with patients and families.
Ironically, one of the particular jobs the tool was designed to do
was improve communication and level out the distinctions between
the medical, psycho-social, spiritual team, and the family,
friends, and the patient, in the last hours of life.
Hospice care is far less hierarchical in spirit, and involves
the whole multi-disciplinary team in looking after the patient. It
has far more time to involve the family. Put bluntly, in a hospice
there is usually more time for this, more willingness, and more
experience and training, and this is what the hospice's independent
funding achieves.
In a busy hospital, where staff must make difficult clinical
decisions and interventions, it may be more difficult for doctors
and families to communicate effectively. Having a checklist of
questions that would be asked routinely in a hospice may challenge
a busy hospital team to stand back and think. The hierarchy is
asked to relax and shift a little: as with medical procedures, so
with relationships.
If the surgeon or consultant's expertise is not needed, the most
important person to the patient's well-being may be a grandchild,
or nurse, or the ward clerk, or someone else who can give whatever
emotional, physical, or spiritual comfort is needed.
Despite the need for all the patient's carers to consult with
him or her (if possible), and with one another, families may
misunderstand their position, even when they have power of attorney
over health matters. This has come about because of the much more
nuanced attempts to respect patients' wishes and rights in recent
years.
THE introduction of "living wills" and "Do not resuscitate"
orders give us the illusion that we can manage the manner of our
own deaths, and it is now a common understanding that it is the
family's right to decide what medical treatment is or is not given.
But, for good or ill, it is still the doctor's right to decide when
and how to treat a patient, in the patient's best interests -
whatever the patient or next-of-kin wishes. It must be so; for it
is the doctor who bears the responsibility, and must account for
his or her professional actions.
As evidence emerges of the mistreatment of vulnerable patients
in some NHS wards, from all levels of staff, it is understandable
that a professional tool to ease death could be misconstrued as a
conspiracy to hasten it, and those who look after the vulnerable
are thought to be motivated principally by cash incentives. Sadly,
the review will almost certainly reveal cases where, through
ignorance, weakness, and even deliberate fault, patients on the LCP
have been caused unnecessary suffering, because caring for dying
people well is a costly art, and few of us have cultivated it.
As a chaplain who has worked in both an independent hospice and
an NHS hospital, I believe that the anger and suspicion that have
greeted the LCP are the natural response to death in an unnatural
setting for three reasons: one timeless, and two contemporary.
THE first reason is that most of us are afraid of dying. Grief
arouses strong emotions in us all, and among them are regret,
guilt, depression, and anger. Finding someone or something to blame
for our loss can distract us from our pain, if only temporarily. We
have no dress rehearsal for helping our nearest and dearest through
their death, and it is something that all of us want to do as well
as possible, for their sakes.
The second is that recent media reporting of neglect in
hospitals, particularly the events at Stafford Hospital, has
affected trust in the medical teams and management charged with the
care of the vulnerable.
The third is that if, as a society, we choose to give financial
incentives to hospitals as a way of improving care in diverse
areas, we should not be surprised if there is confusion about
motivation and compassion.
The LCP as a tool, used in both a hospice and a hospital, is
just that - a framework that presupposes that the
multi-disciplinary team and family surrounding a dying patient will
wish to support them as compassionately and skilfully as they can,
neither hastening nor delaying death. Whether it is used as it is
intended, or by people who cannot bear the cost of caring for the
dying, will be the important question in every case.