Following a government commissioned review, headed by Lady Neuberger, the long emplaced, but highly criticised Liverpool Care Pathway is to be phased out over a 6-12 month period. My own personal feeling is that consultants, doctors and senior nurses already know how to deal with an individual in a hospital (not hospice) that is dying, and the Liverpool Care Pathway's End should have been immediate upon release of the review. For one more individual to be put at risk to the cruelties that are an unfortunate built in side-effect of the Liverpool Care Pathway (LCP) is one person too many.
The LCP itself seems to have been formulated in a “perfect world” hospital, whereupon there would always be on hand a multi-disciplinary team of hierarchal medical professions discussing whether or not to take this step forward “on to the path”. Entering the Liverpool Care Pathway to those within the medical profession was always known that this meant the patient was sliding towards death, but time and again, this rather vague sounding protocol was never explained either to the patient's family or most fundamentally, the patient, if the patient was conscious.
Further, this “perfect world” hospital exists nowhere in the British Isles. The LCP may have been invoked with good intention, but since it's inception in the 1990's it became a frighteningly abused tool – sometimes accidentally, sometimes it's use was spurious, to say the least. In many cases, the LCP was commenced, and family and loved ones were made aware of this, but nurses, doctors and clinicians were using the term “…we've decided to start your mother/father etc on the Liverpool Care Pathway” as a cop-out for telling them the hard but necessary truth that their loved one was dying. This is when they got the prognosis right. In many cases they didn't.
The reason the LCP is such a stain on Palliative Medicine in the UK, is that historically we were the pioneers, and the country that others looked to for their own model of End-Of-Life Care. It also begs the question whether the entire structure of the Liverpool Care Pathway was to make life easier for NHS staff rather than their patients. Once a patient had been been put on to the LCP it was extremely unlikely they were going to get off it. If, indeed, all patients who had been placed on the LCP had been done so by a multi-disciplinary team of consultants, doctors, senior and registered nurses as envisaged by it's original remit, many believe far fewer would have risked the potential indignities and suffering which came as a side effect of the LCP.
If, however, you happened to be a terminal end stage cancer patient, who was extremely ill, admitted on a Friday night, when there were no Oncologists, or senior consultants available, this did not stop the wheels of the LCP from turning. When a duty ward doctor with no experience of the symptoms of certain cancers is the only person available to tend to that patient, who then commences the LCP, and doesn't even explain what this means to the patient's family, then the power invested in that system is clearly being abused by the doctor, intentionally or not. These were not one-off events. These kind of commencements on to the LCP by duty ward doctors, over weekends, bank holidays, or simply – if a multi-disciplinary team could not be gathered together happened over and and over again to thousands of patients. In hindsight, the ramifications of what this means is truly frightening.
The LCP's remit of withdrawing food and water, and commencing twilight sedation with substantial analgesia has a place within palliative care on occasion with certain illnesses – right at the very end of life. Those trained in palliative care know these signs well, through monitoring respiration rates, levels of consciousness, heart rate, and also a level of knowing of what came before. This is why Macmillan Nurses are so good at their jobs, as they watch, hawk like, as a person inexorably moves towards death. The removal of water in particular is something that may not be done until the individual loses consciousness entirely. Macmillan nurses know that it is entirely about making the patient comfortable. If the individual desires a sip of water, or even three glasses of it, they can have it. The same applies to food. These things are not removed in rote fashion as with the LCP, and that's what makes the LCP so wrong. In Macmillan nursing, the issue of moving a patient on to twilight sedation and analgesia happens in a two fold manner, and this is only when absolutely required.
Whilst the patient is conscious and may be complaining of pain, or anxiety then the appropriate drugs are administered. When a patient starts to move towards the end stage of life and begins to slip in and out of consciousness, it is not uncommon for the patient to be commenced on a syringe driver containing both anxiolytics and analgesia. The patient may or may not need them, but it is done for the sake of ensuring the individual experiences a death that is as calm and pain free as possible. It is done as much for the sake of being humane than for any other purpose. I have used Macmillan nurses as an example, there are many other excellent nurses within palliative care who use similar protocols. The LCP is not Palliative Care in any orthodox sense – it is a doctor deciding a patient is near death, often based on scanty information, and withdrawing the essential elements needed to survive – food and water.
There have been many anecdotal cases of families removing their loved ones from the LCP, taking them home, only for the “dying patient” to then recover. This raises frightening questions over what the LCP is/was. It smacks of involuntary euthanasia. There have also been the well reported cases of patients who are clearly not at that end stage of life I mentioned earlier, who have not been dying of their illness, but dying of dehydration. Stories of patients eating the sponges used to moisten a patients lips. Arguments with pompous nurses who refuse water. Family members giving patients water out of vases.
One of the most sickening aspects of the LCP are the financial inducements hospitals have received for implementing the Pathway, and for hitting targets associated with it's use. A response from a sample of 72 hospital trusts found that £12.4 million in the two years to 2012 had been paid out to trusts associated with the LCP. Over 50% of hospital trusts admitted that they were expecting to receive, had received or were going to receive substantial cash rewards for meeting certain targets associated with the LCP.
Under a system known as “Commissioning for Quality and Innovation” (CQUIN), local NHS commissioners pay trusts for meeting targets to “reward excellence” in care. Targets vary from area to area but in some cases trusts are given specific targets to ensure that a set number of people who die in their hospital are on the LCP. In response to the survey, a handful of trusts openly spoke of either hitting or missing targets connected to the LCP in their responses.
The Central Manchester University Hospitals NHS Foundation Trust – which received £81,000 in 2010 for meeting targets relating to the LCP – said the proportion of patients whose deaths were expected and had been placed on the pathway more than doubled to 87.7 from 2011 to 2012. The Bradford teaching Hospitals trust, which qualified for CQUIN payments of more than £490,000 from 2010 to 2012, saw the number of patients dying on the pathway more than double to 51 per cent from 2009 to 2012.
One can only be staggered by the inducements noted above, a kind of reward for killing off your patients. Because if one recognises the LCP is an End Of Life protocol, that's what these inducements amount to. This goes against the very ethical grain of what a hospital's function is for.
It's also been recognised by many doctors from both the British Medical Association, and the Medical Ethics Alliance, that as the LCP is implemented the most in the aged, the most painless and least distressing death for the elderly in the vast majority of cases is a natural death. In a letter to The Daily Telegraph, six doctors belonging to the Medical Ethics Alliance, called on LCP to provide evidence that the pathway is “safe and effective, or even required”, arguing that, in the elderly, natural death is more often painless, provision of fluids is the main way of easing thirst, and “no one should be deprived of consciousness except for the gravest reason.
The more one stares into the abyss of the LCP, the more one sees it's cruelties, it's corruption and it's carelessness. For twenty years this system has been in place, and I thank god it is going. I feel deep sadness for all those who were incorrectly shoved in a cart and pushed on to this frightening pathway. I also feel relief, that my own parents, who will be nearing their 90's in twenty years time will not be subject to the vagaries of the LCP, which seem in hindsight like an idea scribbled on the back of a beer mat, causing misery to thousands, and premature deaths to a still unknown quantity.
