FACT TO FICTION
THE MAKING AND BREAKING OF THE LCP
A RESPONSE TO THE REVIEW OF THE LCP.
Written for various publications.
JULY 17TH 2013
By Nikki Kenward
Heat: heat is a basic human need, it keeps us alive, it provides us with nutritious food, it gives us a sense of wellbeing and it sends us on our way when we’re done with this world. And so it seemed apt, since the sun can make things seem better than they are, that on Saturday 13th July at about 7.15 (unheard of for me) in the morning the heat woke me up to the warming sounds of radio 4 and the mellifluous tones of the Today presenter with the astounding news that the Review of the Liverpool Care Pathway had called for it to be ‘phased out.’ This thing, this hideous, dangerous, indiscriminate, sometime barbaric tool used to clear us out of: the old, the disabled and sometimes those who just got in its way, regardless of age or infirmity, was going. The Review that we had all dismissed as a whitewash was now something, this government body, wanted us to know, had been:
“used as a tick box exercise,” and that, “deaths had been hastened by the premature, or over prescription of strong pain killing drugs or sedatives” and worse still had been part of an, “unnecessary withholding or prohibiting of oral fluids”
Suddenly all our criticism once seen as “exaggerated,” “scaremongering” or “best ignored,” were given validity. All the fighting against, the efforts to convince people of the mismanagement, the downright cruelty and illegality of the LCP were being echoed, by…. well, everyone. Even the BMA who had in fact been noticeable by their absence declared, on Newsnight, that it was ‘obscene and unacceptable.’ Now everyone wanted to get in on the act. Was it an act? Was the furore real, will it count for much when the dust and the dust of recent graves settle?
So how did the furore come about and what was it about the LCP that caused so much devastation?
Go back to March of this year when a group of people gathered in a rather posh hotel in Leeds, they had come with what was left of their hope, not much, maybe just an English reserve that the truth would come out, that at last someone would hear their stories. They were the families and friends, of the growing number of victims dying from the use of the Liverpool Care Pathway (LCP). Gathered there with full hearts and memories of the most awful suffering, loved ones who had cried out for food, for water, and died in so many cases before their time. They had been invited to make their contribution to a ‘Review’ of the LCP, led by none other than Baroness Neuberger and some other notables, (although what David Aaronovitch was doing there I can’t imagine) ten in total (and one actual doctor) tasked with listening and advising on the future use of the LCP. It’s to them that we must bow down and say thank you for their courage and determination to end the practise.
So what exactly is the LCP? For those of you who don’t know.
Around 2000, one John Ellershaw, Consultant in Palliative Medicine, Honorary this that and every other, at the Royal Liverpool University Trust Hospital, (hence the name), bobbed up with a Deborah Murphy, Palliative Care Team Directorate Manager at the self same hospital. And, like all matches made in heaven, the two, dreamt up, with much help from the inheritance of Marie Curie, what they saw as a better more effective and certainly cost cutting way to transport cancer sufferers to the ‘other side.’ All the LCP needed then was a formula to help spread it to everyone and everywhere and some fictions about dying that would soon sound like facts.
Following lots of opposition from other medics in 2009 the LCP was given a face-lift, sadly it just covered up the wrinkles, underneath was the same evil old goat.
The major tenets of the LCP are as follows:
FOOD AND WATER
Relatives were now to be included, talked to, a whole 3 pages of the 19 LCP document were given over to families. Featured in these was this bold statement, they had it, this was the answer.
“Loss of interest in and a reduced need for food and drink is part of the normal dying process.”
This is a fiction that formed and still forms the very backbone of the LCP. If you want someone to die, take away their fluids and the average time of survival is 33 HOURS.
Amongst those fighting to be heard, and being ignored was DR Anthony Cole, Chairman of the Medical Ethics Alliance who said in a meeting at the House of Lords 23rd January 2013.
“In fact no one can survive without hydration and nourishment. They are basic human needs. The human body has a built in control system to ensure that fluid intake continues.”
A PROGNOSIS OF DEATH
Basically unless a patient arrives with a large part of their body missing, a prognosis of death, that is, the person is hours away from dying, is a misnomer or in the case of the LCP a lie.
Step forward Professor Patrick Pullicino, vilified, threatened and ignored, this is what he had to say,
“The crux of the problem is that it is not possible, even for an experienced specialist, to determine with any accuracy if a person’s medical condition is going to be imminently fatal. Since there is no proven scientific way to predict imminent death, the decision of the LCP consensus group is more a consensus on perceived quality of life than on the likelihood of impending death.”
There will be few people reading this who don’t shudder at the mention of ‘quality of life.’
DRUGS AND MORE DRUGS
Given the odd use of “anticipatory prescribing” a form of what Dr Pullicino described as, “reverse medicine” took place. “Confusion met with sedatives, breathlessness with opiates and secretions with atropinic agents.”
So what are we to make of this shock Review? We who have fought for change are of course pleased, relieved, the fight is over. Or is it?
Why phase it out? If it’s so bad just get rid of it – NOW! Surely we need the reassurance that like a plague it’s really gone and hasn’t left a few infected areas that will rear up again when we’re not looking.
The Review strongly suggests that research for, ”the accuracy of prognostic tools for the last weeks to days of life,” be developed – more tools, more tick boxes.
Is the Mental Capacity Act used throughout the life of the LCP still a dangerous tool? The review quotes the Act and despite some rhetoric states that regarding a prognosis that a person is near the end of life, which may as we now know be wrong, that,
“the decision ultimately remains with the clinician”
An amendment to the MCA is desperately needed to protect disabled and vulnerable people from the subjective attitude of some doctors towards us.
How did this happen? How were people employed in a caring profession allowed to get away with this, sometime barbaric behavior for so long? Will anyone be made to answer and pay for what many relatives regarded as murder? The Review panel openly admitted that they didn’t look at medical records, so we have opinion based on peoples horrific experiences; without the facts to look more closely at what really went on. Without the facts to bring people to book, to see some heads roll. They won’t roll, will they, they seldom do. So we have a sort of Vatican version of the truth.
Clearly the fight’s not over until we have learnt to trust those employed to care for us; going on the present hospital news I’ll still be keeping away from hospitals for as long as I can, I’d advise you to do the same. By the way you’ll be comforted to hear that the CQC (Care Quality Commission) is to by heavily involved, so that’s okay then – we’re all safe now – aren’t we?
Of course; the good news is that surely the euthanasia debate is over now, all we need to say is, “look what we did with the LCP.”
The heats still on, “the sun don’t always shine on the righteous.” I’m not bathed in the sunshine of that hopeful morning anymore; I’m waiting for their next move, out of the frying pan and into the pyre. I think it will be ‘comfort care’ look out and run, if you can, when you hear it.
So we won’t stop fighting, it’s not over yet.
You might be interested to know that back in that posh room in March, there were plenty of drinks, some food I believe; however something really important was missing. Of the 10 on the Review board only 2 bothered to turn up, one; was Denise Charlesworth- Smith whose dad had been killed, she being the only family rep, so you’d expect her to be there and Dr. Dennis Cox. Neuberger was on holiday, good planning there Julia, really sensitive. It was the Adlestrop of enquiries, except it wasn’t a proper enquiry and ‘no-one came.’ In terms of adding injury to hurt it doesn’t get much worse. I believe that they did manage the other meetings, but by then the hurt was done; especially for Eddie Woodhead who registered in the strongest terms his disgust at their behavior.
The final words should go to Annette whose mum Margaret died on the LCP, she remembers her crying out for water. We would do well to hearken to her words about her lovely mum when she says,,
“it’s a picture I’ll never get out of my head.”
For more details and in depth information about the LCP go to:
For the Review (Less Pathway More Care) go to: