A few weeks ago I instigated a debate in the House of Commons on the Liverpool Care Pathway. The gist of the speech with which I opened the debate was that in general, I support the principle of transferring the commitment to palliative care typical of hospices to hospitals and other forms of care - but that the Pathway must be implemented strictly in accordance with the principles on which is has been established. There seems to be much evidence that this has not always been the case. I asked that the Gov't thoroughly investigate recent publicity about patients being placed on the Pathway without consultation with them or their next of kin. This is not acceptable. There are also reports of other departures from proper procedures. A line which grabbed public attention and summed up my approach was that "we shouldn't scrap the LCP - we wouldn't scrap the Highway Code because there are some bad drivers on our roads".
Since the debate, the Gov't has appointed former Lib Dem peer, Baroness Neuberger to chair an independent inquiry. She is on record of being supportive of the Liverpool Care Pathway, but there is no reason to think she will not be thorough and objective. She will have read comments in yesterday's Telegraph by her former Lib Dem colleague, Lord Carlile of Berriew, which offer her some strongly worded advice. On this sort of issue, I usually agree with Lord Carlile.
While I do not disagree at a fundamental level with anything Alex Carlile is reported to have said, there is no doubt that the tone of his comments take him further than I went. He calls for the Liverpool Care Pathway to be replaced, and to be given a different name. I would support that if Baroness Neuberger recommended it, though my view is that the problems arise from the Pathway not being followed as it should be, rather than the Pathway itself. I do agree that 'Pathway' seem to me to be a particularly unfortunate name though. Alex is also reported to be calling for doctors who put patients on the LCP without telling next of kin to be reprimanded by the General Medical Council, even 'struck off'. Personally, I feel that continuing with regular checks every few hours to make certain that patients have not rallied enough to be taken off the Pathway is another crucial part of proper palliative care. Whatever, Its clear there's much uneasiness about how the Liverpool Care Pathway is being implemented, and we need the independent report delivered to Secretary of State for Health as soon as possible.
11 comments:
As you know I have serious reservations and do think it is open for abuse. Only today it has been discovered that people with dementia are being put on this pathway. I also don't think someone who is pro the pathway should be heading the enquiry . Someone without any predetermined opinions should have headed it. Before anyone is put on this pathway a legal document should be drawn up so that there is no room for doubt as to the wishes of the patients or next of kin and there ought to also be logged the reasons as to why this is considered necessary and signed by two doctors.These should be held and a sample of these taken to make sure that abuse is not occurring, to protect the patients and the medical staff . As for doctors not following protocol then yes they should be sanctioned as suggested . Well done though Glyn for raising the profile keep monitoring it Val Ingram signed as anonymous as the only way can get to post this
I too feel the LCP is too easily abused in NHS hospitals. Scant attention is paid in the LCP procedure and documentation to establishing definitive diagnosis of the patient’s condition and the lack of questions and space on the LCP form to ensure that the patient’s condition is indeed terminal.
My father died on the LCP in an NHS hospital. My family would describe the experience as horrific. The LCP’s claim, that “patients are put on the pathway only when all reversible conditions have been appropriately treated” is untrue – in practice there are gross breaches of LCP protocol. A year previously, my father had been discharged from the same hospital in agonizing neck pain, which they put down to “wear and tear”. Following a private consultation and a CT scan it was found that my father was actually suffering from a broken neck – a “hangman’s fracture” and he was re-admitted as an emergency to the NHS hospital.
Eventually he was fit enough to be discharged and come and live with us. Although he was severely disabled he enjoyed family life immensely. He was re-admitted to the NHS hospital on Friday evening 15th June 2012 with a bladder infection.
He appears to have been “parked” by the hospital on a hospital ward with no urgency whatsoever put behind arriving at a full diagnosis and treating him. His condition deteriorated and he became very short of breath, but despite our vehement protestations, the medical team refused point blank to carry out appropriate investigations to properly diagnose his condition, such as an emergency CT scan.
We were told by doctors on the morning of his death, 19th June 2012, that he had an inoperable abdominal perforation and that a move to palliative care on the LCP was the only compassionate step to take. When we challenged the diagnosis, on the basis that he had no symptoms of perforation and the Hospital had only done 2 x-rays which were inconclusive, the doctors insisted that it was not in doubt and palliative care on the LCP was the only option.
We now have the LCP document from his medical notes - signed by his geriatric consultant and someone who is described as a “Junior Sister Nurse” (?? surely not qualified to make a clinical diagnosis of viscus perforation?). The LCP document states a diagnosis of just 'perforation'. This is sloppy and imprecise. No details are given of which organ is supposedly perforated.It is grossly inadequate.
3 hours after my father’s death the geriatric consultant rang us at home to say she had passed his case to the coroner and there would be a post mortem. When I asked why, eventually she admitted to me that the Hospital had contacted the Coroner about my father’s death because they were unable to complete the MCCD (medical certificate of cause of death) as they simply did not have anywhere near enough detail about his condition to meet the standards required by the MCCD. (Ironically, I later discovered that rules for the MCCD were tightened up following the Shipman Inquiry).
At post mortem by the Coroner’s pathologist it was found that diagnosis of perforation was incorrect – there was no sign of viscus perforation and my father had died from respiratory failure caused by pulmonary emboli, a treatable condition which – with prompt diagnosis and medication – can be cured.
In reply to my formal complaint, the Hospital Chief Executive said: “I can only apologise that the planned surgical review suggested in your father’s medical notes on 16 June did not take place. This is not the standard of care we would expect to deliver and I am very sorry that this did not take place. In the absence of the surgical review the possible need for a CT scan was not considered”.
In my opinion, the treatment of my father was a typical demonstration of the institutional intolerance, apathy and discrimination towards vulnerable elderly patients prevalent in NHS hospitals where the LCP is practiced, which is too easily abused.
SIGNED JACKIE LEOTARDI
In reply to one of your previous commentators, dementia is, in itself, a terminal condition. The LCP is entirely appropriate for patients with dementia.
I remember the days before the LCP, when patients often died in pain. I have seen a young woman gagging on a feeding tube which was being passed twenty minutes before she died of a congenital condition, a dying patient with liver disease bleeding from every orifice crying in pain and distress but denied morphine in case it 'finished him off'. I would not like to see a return to those days.
The LCP is about allowing peaceful death and only appropriate interventions. All of the actions mentioned in the document (giving only appropriate medications, ceasing unnecessary blood tests etc) can be initiated without the LCP, and it serves only as a formalised documentation of appropriate end-of-life care.
It is not written in stone.
I personally feel the recent hysteria surrounding it comes from poor understanding by the public, the grumblings of a small minority of mostly religious medics who have personal views about the sanctity of life and its preservation at any cost, and irresponsible journalism.
In almost twenty years as a healthcare professional,I have NEVER seen it used to free up beds and find this a most ridiculous accusation.
I agree with anon 12.21, I have worked in the NHS since 1988. It has never been used to free up beds, or save money, or as a form of euthanasia (or murder as assorted media like to use the most inflammatory word. I have never used dementia as a reason not to treat or not to resuscitate, because I believe I cannot judge the quality of someone else's life. To anon 11.04, dementia is a terminal illness and at the very late stages, patients are unable to swallow safely and choke on their food and drink, artifical fluids make them swell up and artificial feeding is painful and can accelerate pneumonia. Better to give sips of fluid, mouthfuls of ice cream whenever the patient wishes, and accept that end of life is approaching. Eventually the point where the LCP is needed is reached. I have always taken the time to explain to family (this can take an hour) but the patient usually is too confused. Very few patients have ever discussed their wishes for the end of their life with families. And finally, as cost pressures mean my colleagues who are left are not replaced, and my workload increases (by 25% in the last 2 years), there is less time for me to devote to the most satisfying (and least managerially valued) aspect of my job, which is talking to patients and families, everything becomes instead a finger in the dyke/treat headlong rush instead.
One cannot and must not be blind to the dangers that the Liverpool Care Pathway has, as many have found to their dismay.
Families have lost loved one's to what they feel was nothing less than murder, it sounds harsh, but it needs to be said. Complaints are all held internally, take a long time to process and are often not worth pursuing. One cannot ignore the magnitude of the problems associated with the Liverpool Care Pathway and at times, death is far more a painful process than they would have us believe.
It is simply not being used as described, hard pressed doctors are prone to mistakes and reports of maltreatment, physical abuse and misdiagnosis are rife and this is not just down to some newspaper headlines.
Along with everything else which has happened, the Liverpool Care Pathway should be stopped until a thorough public investigation has taken place. I also suspect that in a number of circumstances the police should be involved as abuses of human rights are very evident.
Finally, there is no reason for anyone today, to die in pain and there is also no need for a panacea protocol for dying patients. Care should be based at a personal level, not on the basis of a national program. Each individual need is different and the Liverpool Care Pathway is far too open to systemic and willful abuse, its diagnostic criteria is based around guesswork and supposition and it could easily be used incorrectly and as a means of fast track euthanasia.
It is far to open to systemic abuse, for it to be trusted by people and rightfully so and certainly after all has been revealed about the NHS to date, the Liverpool Care Pathway, could yet open up even more serious allegations.
Time has long gone for this Government to look towards the patients of the NHS and not play host to its overbearing almost totalitarian self governing autonomy.
The NHS needed much more public accountability, before any protocol such as the Liverpool Care Pathway, was even thought of, let alone made widely available. The risks and dangers are simply to high
The recent days, is just the tip of the iceberg.
And before anyone jumps in, I saw first hand how one of my closest relatives was treated when this first came out. Believe me you would want to avoid it.
Sleipnir2006
I live in the U.S. and I believe this thing is going to be implemented over here. I do not want it for myself and am leaving instructions. It had better be done my way.
There is nothing wrong with hospice or hospice nurses, if that is what you wish. It is when they start rationing health care for seniors and others that it becomes possible murder.
I believe that this president is going to be pushing this for senior citizens, of which I am one. Everyone had better keep their eyes and ears open.
how on earth can the liverpool lazarus care pathway be an independant inqiry when the chairman baroness neuberger is a supporter of this inhumane way to let patients starve dehydrate and poisoned to an early grave and that is fact, four professors dozens of doctors all complain and say its nothing short of euthanasia, and should be abolished.
citizens beware the kings fund is a deep society and baroness neuberger was well established in it this kings fund has a lot to do with the dreaded liverpool lazarus uncaring wrong pathway, it should be abolish the kings fund is a shady bit of work believe me.
yes put n h s patients on the pathway but no way royalty like philip but why i know they know it is very flawed and a dangerous way to not treat parients, its barbarick.
My mother, who had dementia, but was living at home with carers, had a fall in January, sustaining a severe head injury. She was put on the LCP and I was told she had hours to live; then I was told her organs would fail. I had to argue the case for her occasionally to be given fluids on a drip and, once minerals. After 13 days, they said she was coming off the LCP because they were finally seeing what we had been seeing in terms of her responses. They just did not believe us. Even when we showed video clips of her rsponsing, we were told patients often had 'golden moments' before dying. She is now in a nursing home. She is severely disabled by the fall, but can say a few words, smiles quite a lot and seems to enjoy her food. I am sure she would have wanted to die rather than be in the condition she is now in, but I could not bear to watch her suffer in the hospital with the dehydration and starvation that existed for the first few days. I was also not told about the LCP - I had to ask, which they did not seem to like. I belive it was inappropriate for a 'head injury' as they are unpredictable.
thank the lord the liverpool death pathway has now been abolished they say they are takeing it out from six to twelve months why not straight away, i am watching with care what goes in its place or is it just the name taken out. we eagerly await.
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