Saturday, January 05, 2013

Liverpool Care Pathway

Next Tuesday afternoon at 2.30, I will be opening a 90 minute debate on the Liverpool Care Pathway in Westminster Hall. I expect to speak for about 20 minutes, with perhaps another 10 minutes if there are a lot of interventions from fellow MPs. I may shorten my speech if there are many other MPs wanting to contribute as well. I intend to order my thoughts on this important issue on Monday, but this post is meant as an opportunity for visitors to this site to influence what I say.

The reason I asked for the debate was the horror with which I have been reading articles in the Mail/Telegraph (and others) describing the LCP as a 'Pathway to Death' and describing it as tantamount to euthanasia. I'm not in a position to challenge the truth of these allegations, but this debate cannot be conducted only in the sensationalist way that newspapers tend to do. Its vital that Parliament discusses all aspects of the issue in a considered and responsible way. We must try to limit the fear that this 'shocking' publicity must be creating in the minds of people suffering terminal illness, or of the frail elderly simply going into hospital. I hope we can have that responsible debate on Tuesday.

I will want to begin my speech by stating what the LCP is and what it is not. In the late 1990's the LCP was designed by the Marie Curie Palliative Care Institute in Liverpool, and is now widely used across hospitals in England - aand the world! The aim is to replicate in hospitals, care homes and at home, the high levels of palliative care that has long been typical of hospices. The LCP is not a treatment, but a set of 'guidelines' to help doctors and nurses who are caring for patients in the last hours/days of their lives. It does not instruct doctors in how to treat patients, but prompts them to consider whether certain care regimes or treatments are appropriate in the circumstances of individuals who are dying. And every case must be treated as 'individual'. Its also crucial that there be no 'secrecy' and that the patient (if appropriate) and/or next of kin are involved in the discussions.  The LCP is not about ending life, but about providing the best possible end-of-life care.

We will not be able to ignore the serious allegations that have been made. The reality, as in every occupation or branch of medicine is that there will be examples of excellence and bad practise. Tens of thousands of people die on the LCP every year. Its seems probable that there will be instances of bad practise (hopefully rare). We must do all possible to eliminate these instances. When allegations are made (and there should always be avenues through which its easy to make them) they should be thoroughly investigated. If not, the integrity of the LCP was be seriously compromised.

The Gov't is conducting a review of how the LCP 'guidelines' are being used. I hope its comprehensive, and ruthless in its honesty. The LCP  is hugely important in ensuring that end-of-life care is delivered with compassion and as little suffering as possible. Over 20 of the leading health-related voluntary organisations and the Dep't of Health have signed a 'declaration' in support of the LCP. I agree with them. But on its own, this will be not enough. Its vital that allegations which have the potential to undermine trust in the LCP are faced and investigated. It must not be left to the media. These are the messages I hope will emerge from Tuesday's debate.

59 comments:

International Lady said...

I would like to add to your debate. As a nurse who has worked in both Palliative Care and Care of older people, I have used this pathway. I can only say it has benefited all of those I have cared for.

I think the issue really is about ensuring Doctors and Nurses in all specialities are trained to use this.

Having recently used this as an Agency Nurse in a Nursing home I can categorically say some are very poorly informed about its usage. I came across some nurses who I had to instruct and teach about the pathway.

Please therefore concentrate your debate on the education issue rather than the pathway itself.

Thank you for being open minded and not following the line of the sensationalists.

Sue Dray RGN, BSc(hons), MSc, PGDip

Anonymous said...

I am a doctor and currently work in elderly care. In the last 4 months I have placed several patients on this pathway. All with severe illness, all after treatments have failed, all would have died with or without the pathway. The pathway prompts nursing staff and doctors to talk to relatives, its helps us to ensure a person dies with dignity, it makes sure they don't die in pain or distress. Of course there will always be problems with any pathway or guideline, and a lot of the cases outlined in the press where the lcp has gone "wrong" seem to have occurred where there has been poor communication between staff and family. We need this pathway. We need to ensure people don't suffer needlessly in their last hours. We also need to discuss death and dying openly, and at least the negative press has ensured this happens, but we also need to get the true facts out in the press about this pathway.

NurseSouthWest said...

I am a Nurse, and I have cared for many people under the guidelines of the Liverpool Care pathway, or as we call it in my Hospital: "Care of the Dying" pathway. For someone to be placed on that pathway, they will more than likely be someone who is perceived to be dying. There are many indications that someone is dying, and it is not a decision that is made lightly. In the 4 years I've been working on the wards, Some people have not died on the pathway, but 95% of those have passed away. Sometimes all the body needs is for medical staff to stop poking and prodding a body, and, then they will wake up, such as a patient I had in the summer, who was discharged about a month later. On New Years Eve, I looked after two patients, both of whom were on the Care of the Dying pathway, and died that day. Food and fluid were not withdrawn on these patients because we wanted them to die, but if someone is unconcious, they cant swallow, can they? Both had fluids prescribed, given through a subcutanious needle into their stomach to maintain a fluid balance until it was no longer needed. Both patients were comfortable, and surrounded by their loved ones as they passed.

In my experience, There are some families that are in denial when family members are ill. I have looked after patients whose relatives have said to me "I'm not ready for them to die" or "I dont want them to die" and expect us to revive them when their heart stops beating. A medical registrar once said to me (as a newly qualified nurse, questioning his decision not to resuscitate a 97 year old lady) "97 year olds don't have cardiac arrests, they die." This, at the time, came across as slightly cold, and maybe heartless, but having been involved in 37 Cardiac arrests (and only having one of those people survive) it is violent, scary and completely undignified.

I support the LCP whole heartedly. When I was training, my Hospital called it TLC (Tender love and care) When it is used correctly, it is one of the most successful tools we possess in the NHS. I use the word tool, as it is guidelines that are followed to ensure every facet of human need is met and maintained. I would rather have a member of my family pass in peace in their bed, surrounded by loved ones (as my Grandfather did, just before Christmas) Than resuscitated with little to no success (as my Grandmother did, 2 years ago, this week.)

Nurses try their best. We are stressed, overworked and constantly trying to meet virtually unobtainable targets. To have these accusations hanging over our heads, saying that we don't care is unfair. I find the Daily Mail's articles are biased and sensationalised with little or no research, no balanced argument, and an awful lot of opinion. Very few facts. Scaring people with half truths.

As a final note (I could sit here all evening giving examples of the good use of the Care of the Dying pathway, but I've got to go to bed, I'm on shift at 7am.)I have yet to have a family complain because we have cared too much for their relative. In the summer I looked after a lady who was very poorly. Her family kept a bedside vigil as she lay dying. We looked after them, as well as our patient, and after she passed, we received an invitation to have tea with the town's Mayor, to thank us for all the care we gave his mother-in-law. He had never mentioned what he had done for a job. It was just the way we care for people in my hospital.

Ben Makin said...

Please raise the issue of irresponsible reporting and its consequences. The Mail and the Telegraph in particular seem to be tapping into the denial and anger which are a natural part of the grieving process and demonising doctors, nurses and other healthcare professionals. The consequences of the misinformation are serious; trust is being eroded between the patient and family members on the one hand and their carers on the other. This heightens anxiety and fear at the most stressful time in people's lives; healthcare professionals are already reporting that people are refusing the LCP because of this misinformation. As a result they or their relatives are dying anxious and fearful deaths and in unnecessary pain. The journalists never see this, of course.

Janice Edwards said...

I worked in a Hospice for 27 years and we used the LCP routinely. Not because we needed the guidlines particularly but so that we were familiar with them in case of a query from another user. people can be put on the pathway and also removed from it if their condition changes. I cannot comment on cases about which I have no knowledge but would like to point out that many bereaved relatives are angry as part of their grieving process and unaccepting of the actual terminal state of their relative and want to hit out at whatever they percieve to be at fault. This can be the staff or the pathway. I agree with the comment above that there is a lack of knowledge in some settings about the use of the pathway however it was my experience that the knowlegde is there to accessed if the effort to do so is made. Janice Edwards RGN

Anonymous said...

As a Scottish nurse in Acute medicine I have used the LCP often and with great consideration for my patients and their families. I cannot think of ever starting the pathway without either discussion with the patient, the patients family or in some cases the patients legal representative. As said by another it is perhaps lack of education on when it is best used and how to use it to the full advantage of our patients.
Thank you, the backlash from most of these uninformed media sensationalist, headline seeking people could set dignified care of the dying patient back into the dark ages. Chris Batchelor

Anonymous said...

I am also a nurse who has worked in a range of areas of hospital settings, including emergency nursing, an I have seen the LCP used with excellent results for the management of the dying patient. I currently work on a care of the elderly/ complex discharge ward where some of our patients are palliative, and are being mismanaged by the LCP being delayed in being started, and either being too late to be started or the patient not receiving optimum benefit from what the pathway offers. I feel doctors, now are more apprehensive to broach this highly sensitive subject with families, due to the scare mongering in the media. What it seems everyone is forgetting is the LCP is not a death sentence, and can be stopped at any time should the patients condition improve sufficiently!!

Simon O'Hare said...

I am a junior doctor working in Wales. It sounds like you have a balanced viewpoint to put forward.

I would like to request that after it has been established that certain sensationalist articles have caused unnecessary fear and mis-trust of both healthcare professionals and the LCP, some penalties are applied to the organisations and individuals responsible.

Simon O'Hare

Anonymous said...

Thank you for welcoming comments prior to your debate.

I fear that media ‘sensationalism’, and exploitation of bereaved families are the reason why the daily mail and alike newspapers have led us to this.

Having read the criticism in such articles and discussed these with my friends and colleagues, I feel an overwhelming sense of frustration that journalists can pretend that they have a moral and ethical superiority in saying that the LCP is dishonest in its motives. They have not used it, and clearly do not understand it.

I have cared for many people in their final days and hours. Each patient has died because of his or her disease and illness – and without the LCP to help me guide their treatment, many would have died in distress, pain and agitation. Despite our medical advances, we are all mortal beings and will die. What are we to do in such times without guidance from the LCP? People do not have to die in agony and distress.

I am worried that this media hype has portrayed the LCP as something it is clearly not, and I have seen in the past few weeks the effects of this – last week I treated a patient who had very quickly deteriorated with pneumonia, and was severely breathless and distressed. I suggested to the patients relative I give him a small dose of morphine. She replied ‘to finish him off!’ – it was her genuine belief that I wanted to give him medication to ‘finish him off!’ What was the alternative – to leave him in agony from being so breathless?

I hope the outcome from your debate will emphasise the need for public education on the principles and methods of the LCP, and that when doctors and nurses say they want their patients to be on the LCP, it is because they care and want to alleviate their patients suffering.

Dr Gavin Lewis, CT2, Royal Liverpool Hospital

Anna Emmott said...

I await the outcome of this debate with interest. I am a GP but as I am currently on maternity leave I cannot comment on how this recent publicity has affected end of life care. What I do know is that when I have used the pathway in the past I have found it a helpful way of reminding professionals not to miss any aspects of the care we were trained to give. I am a relatively young doctor (graduated 2004), and I have encountered older doctors who dislike the pathway, but only as part of a general distaste with with weighty documents which take a bit more time to fill in.

I have once taken someone off the pathway, when they made a better than expected recovery from an infection in a care home. I do not believe that it was an error to start him on it, however, because medicine is not an exact science and if we only applied good care to those who were certain to die that day we would miss many opportunities to help those very likely to die.

I know many others have said this but I would also like to reaffirm that the pathway cannot cause death when used properly. I urge anyone who does not understand this to read the document.

Dr Anna Emmott MBChB MRCGP

mrs_sock said...

As a relative, I wish the LCP had been used appropriately for my mum in law. I had to ask for something to make her comfortable in her last few hours as we knew she was terminal, had hours left, and yet her sons were out through the distress of watching her struggle to catch her breath, the noise of the oxygen mask obscuring her face as she tried to say goodbye, a tissued IV...
Compassion is not playing god.

Anonymous said...

I am glad that you have understood the purpose of the LCP & not relied on the misinformation that has been put about in the press over the last few weeks. You are correct that it is only meant as a prompt for healthcare professionals to use, & it is important that people understand it is a way of tailoring care at the end of life for each individual patient.

As a geriatrics registrar I feel that it is important that we continue to use this tool to ensure the best care possible when we identify that there is nothing more that can be done to cure a patient. However, a tool is only as good as the people who use it. I suspect many of the articles seen in the papers are a result of poor understanding of the LCP by.doctors & poor communication with patients & their families. This can easily be prevented by educating healthcare professionals in its use.

I would also strongly urge that the suggestion that relatives have to "give permission" for its use (as was suggested a few weeks ago) is not upheld. I do not feel it appropriate that a patient should have to wait for family to arrive in the hospital before the best care is provided for them - some live a long way from their families, have specifically requested not to be contacted at night, or simply do not have much involvement in their relatives' care. Communication is the key here, & it should be discussed at the earliest opportunity, but a delay in appropriate care is unacceptable. Starting a patient on the LCP is not a decision taken by one person, it is made by the multidisciplinary team. If anyone (including relatives) questions its use at any time it is (or should be) reviewed.

I hope that the focus is changed to ensuring proper education about use of the LCP & away from the notion that it is a form of legalised euthanasia. It is a fantastic tool to prompt us to consider those things that are important at the end of life, and I think it would be a disaster for palliative care if its use were to be reduced or stopped.

Dr Philip Berry said...

Your summary about the LCP seems balanced and accurate. Could you consider the following?

That the majority of doctors support LCP.

That the errors in implementation seem to derive from poor communication rather than intrinsic problems with the LCP itself, and the importance of talking with relatives must never be underestimated. The LCP protocol emphasies comunication, so this may need renewed focus, but LCP doesn't need redesigning.

That the press coverage has been irresponsible at times (the way it spilled over into an accusation that neonatal ICU patients are mistreated was terrible). Notably, the Daily Mail failed to publish or reply to a reasonable letter from Fiona Godlee about this story.

That financial incentives are invisible to practising doctors on the shop floor - money does not enter our thoughts when considering LCP. 'Bribery' was an incredibly poor choice of word, and suggests we are open to motives that are not patient centred.

That there is no evidence for euthanasia or involuntary killing - if LCP equated to this we woulld be looking at the largest murder enquiry in recent history. Equally, there is no evidence that doctors using the LCP are interested in clearing hospital beds.

That 'evidence' is demanded by critics when trying to undermine the use of LCP, but is not provided to back up their most extreme accusations.

Anonymous said...

Thank you for opening this debate, and for inviting comments. Here are some comments on common misconceptions around the LCP which I hope will be helpful.
1. The LCP is a self-fulfilling 'death pathway' and inevitably causes death. No, if fact in around 10% of patients started on the LCP, the pathway is stopped due to improvement. The average length of time on the LCP is (I think) 29 hours, though I have also looked after patients in whom the pathway was started within an hour of their death, and others who were on it for over a week. Other patients (rarely) have been on and off the pathway several times in their final months.
2. Food and fluids are denied to patients on the LCP. No, patients are encouraged to eat and drink as much as they can manage. In fact, the LCP suggests routine observations and tests such as blood pressure measurement are stopped and instead nurses spend time attending to feeding / comfort. The pathway does prompt consideration of whether fluids via drips are necessary as these often cause more harm than good (eg pooling in the lungs, causing breathlessness). Regular mouth care to prevent the sensation of thirst is a cornerstone of the pathway.
3. All patients are given sedatives, hence self fulfilling death. No, all patients are *prescribed* sedatives and pain killers such as morphine to be used if the clinical team (usually nurses) feel they need them. This is in order to avoid a lengthy wait in the middle of the night if a patient develops pain. No patients are *administered* sedatives or pain killers unless they need them.
4. It is impossible to predict when patients will die. Yes, though it is often possible to have a pretty good idea. The LCP is designed to be used for the last few days of life. At this stage signs that the patient is dying are that they may be semi-conscious, eating and drinking very little, and bed bound. At this point, the LCP facilitates a switch in focus from cure to comfort and dignity.
5. The LCP is a guide, and does not replace clinical judgement. I have used the LCP simultaneously with intravenous fluids and antibiotics, because I felt that the combination of both provided best care. There are no hard rules.
6. Doctors are being paid for putting people on the LCP. It is correct that some trusts have a CQUIN target to increase the number of *expected* deaths that use the LCP. This is because the LCP is considered to be a framework that facilitates best end of life care. The key nuance missed by the press is that only the *expected* deaths are included - ie patients declining over weeks/months from chronic conditions. Of course it would be outrageous to have a target for *all* deaths.

End of life care in the UK has improved dramatically over the past 10 years. Part of this improvement, in my opinion, is due to use of the LCP, which has normalised dying for doctors taught only about cure. The LCP is not perfect - it's a guide to prompt assessment and treatment of symptoms common at the end of life, and as such it's only as good as the team using it. What the recent press coverage has shown without doubt is that there are grieving families who feel the LCP has been used badly or inappropriately, and however small this minority is, these claims need to be investigated. However, these issues seem to me to be less an issue with the paperwork of the LCP and more an issue of poor communication from the teams using it.
There is no doubt that end of life care in the UK can be improved. The recent debates highlight the urgent need for education and training of health care professionals, particularly around communication. Health care professionals need to be taught how to recognise that a patient may die in the next months, and given the skills and time to discuss end of life preferences with the patient and their family in advance of their final illness. We have an opportunity to build on what we have achieved in the past 10 years in care for the dying. Let's not undo it.

Dr Katherine Sleeman
Clinical Lecturer in Palliative Medicine
@kesleeman

Anonymous said...

My 96 year old mother was admitted to hospital last summer with pneumonia. Every effort was made to get her better, cost and age were clearly not an issue. Because of her problems with aspirating food, staff spent whatever time was necessary to feed her, their patience was amazing. At the point when she herself decided that she no longer wanted food or drink, she was put on the LCP. The staff discussed this fully with the family and we agreed that this would be the best course of action. We were told that she could still be offered food and drink, in fact she had been offered food the day before she died. She died very peacefully with family around her and did not appear to be in any distress. The Daily Mail have implied that it is a way of the NHS getting rid of expensive patients, I think it is very important to point out that private hospitals use the LCP as well. My daughter worked in a hospice and told me that they frequently had patients from private hospitals who were on the LCP when they arrived and were then taken off it by the doctors at the hospice. I feel that this whole issue is being used to once again demonise NHS staff for political reasons.

magsarabi said...

I am a registered nurse and have worked in elderly care for over 20 years. I have worked in my local hospice for the last 7 years. Whilst I always tried to give the best possible care, I can think of numerous cases where if i had known about the LCP my patients would have suffered less at the point of dying. At the hospice use the LCP for patients who are thought to be coming to the end of their lives. As someone else above commented, we sometimes have patients coming from private as well as NHS hosptals who have been put on the LCP too early and we have taken them off and they have been treated ccordingly (these patients did later go on to die on the LCP) Sadly because of the scaremongering from certain newspapers we have for the first time had people refusing to accept the LCP. The care that we give to a dying patient in the hospice is always in the best interest of that patient , therefore the care that someone who refuses to go on the LCP gets is still to maintain their comfort, to withdraw oral medication if they are unconcious or unable to swallow, to offer food and drink for as long as they are able to take it, to administer appropriate medications when the patient appears to be in pain or agitated. The paperwork in these cases is different and takes a little longer, but end of life care on the LCP is care at it's best and we cannot better that!

carol dean said...

I'm going to echo many of the comments here but I hope that's a good thing. I'm a nurse who works on a very busy acute care ward for patients with kidney failure. Our patients often have several co-morbidities and are an increasingly elderly population. The introduction of the LCP has been a very positive tool in providing a far more consistent level of care to the dying patient for both the medical and nursing care perspective. Medications are gone through and those no longer of benefit don't have to be given, those essential to ensuring comfort and alleviation of symptoms are properly prescribed. We address not just the physical care of the patient but the spiritual, we recognise the value of the relatives and include their need for support rather than it being so much more hit & miss before the LCP. I can't say that there have been cases where the tool has been applied inappropriately or the care less than desirable, but one might argue that with no tool at all, the outcome might have been worse for many more than it has been detrimental to. Some family expectations are just so far removed from reality that it can create huge problems and in some cases, much distress & suffering to their dying family member, through the excessive denial of death approaching. Just because certain treatments exist does not automatically mean they must always be applied and continued when the suffering caused to the patient has no perceived/visible benefit to the patient, and the LCP helps medical teams & families realise this. The media who are using the LCP to sell their products with their scaremongering tactics should be made to prove that they have actually seen & read the documentation by printing a full copy of one and inviting comment from their readers as to where it says it starves people to death or dehydrates them to death or drugs them to death....! I suspect they'll be looking a long time. I wholeheartedly support this tool and I hope your raising of this issue will ensure that it's value in improving patient care at the most vulnerable point of their lives in promoting a calm, dignified and above all painfree/comfortable death is fully and finally recognised.

Jordi Morell said...

Dear Mr Davies

Having read the above posts and those elsewhere on the Internet in support of the Liverpool Care Pathway I am heartened that this debate will take place and I hope it will go some way to restoring the public opinion of the pathway that has been harmed by recent press coverage. I think you have all the relevant information to support the continued use of the LCP but I am keen that the debate be even sided and thus far the comments I have read are predominantly those of people who vehemently support the pathway or those who oppose it and are clearly poorly informed and therefore cannot put their point across as clearly.

The cases described in the press where things have 'gone wrong' in the application of the LCP are quite worrying and in the majority of cases highlight a woeful lack of communication between medical and nursing staff and the patient or their relatives. This is something that must be addressed as the spirit and practice of the LCP is underpinned by the considerate explanations and communication with all the involved parties. In my hospital the LCP is usually not commenced until family can be present for discussion, this often means that the patient may receive uncomfortable treatments or procedures whilst waiting for the family to arrive but we still do our utmost to manage distressing symptoms in the meantime.

Some cases were reported with obvious factual inaccuracies, particularly those that essentially accused the medical staff of criminal behaviour, but it is impossible to defend these accusations without breaching confidentiality or in response to legal action ( which I would encourage if the accusations were true).

In summary I am pleased that this debate will take place and I hope that the high levels of support for the LCP is highlighted, I hope that many of the myths and misunderstanding around the LCP will be clarified but I think doctors and hospitals need to do better when implementing the LCP, particularly with their communication.

Yours sincerely

Jordi Morell
Specialist Registrar Geriatric and General Internal Medicine
North West England

Jim Murphy said...

Firstly, thank you for bringing up this debate and offering to provide some balance following the extremely damaging media campaign against the LCP. As you will see from many of the comments from healthcare professionals, the LCP is widely supported, when used appropriately and communicated with relatives and where possible, patients. This communication is indeed key to the LCP and for further information on how the LCP should be used and for the document itself, please direct your colleagues to the creators of the LCP via www.mcpcil.org.uk.

What I would like to add to the comments is my experience of Daily Mail journalists writing about negative experiences of the LCP. When asked whether or not they had seen the case notes of the patients involved, I was told by one journalist that they had not, but would be reporting what the family had told them. When challenging other journalists on this, I have been ignored. So without any evidence other than what they were told they were willing to run such damaging coverage. This, as you are aware is the type of journalistic practices that the Leveson Report damned and what essentially lost the Director General of the BBC his job.

A review of the patient cases reported by the Daily Mail should be undertaken to ascertain whether the patients were actually supported by the LCP. I feel that it will find not all were. This isn't to say that the relatives are lying, but they are perhaps confusing the LCP with other care pathways that the patient may have been on. Either way, it is the role of a responsible journalist and editor and publisher to ensure that the true facts are reported.

Jim Murphy said...

Sorry - could I add my name to the last comment from murfsmurf@gmail.com - Jamie Murphy, MCIPR

Sue Chapman said...

I am a Carer with no medical background. Until 3 years ago i was a Manager in a HR Dept looking after my sick Mum who had COPD, she had a stroke 5 years previously which took her peripheral vison and blurred her eyesight, she had Cirrossis of the liver, she had Ischemia and as a result had to have both legs amputated. She was a poorly lady and had been in and out of hospital alot. The hospital staff at Bradford Royal Infirmary treated her with such dignity, their care was amazing - it really couldnt have been better. They approached us as a family and explained about the LCP and we decided to put her on it. We had time to say our farewells and she was surrounded by her family when she quietly passed away. It was a very dignified end to what we knew was inevitable. As a result of seeing the great care she had received i changed career and trained to be a Carer. I wanted to give something back to a profession that helped us get through what was the worst time ever. Sue B

charlotte enderby said...

I would simply like to add my voice in support of the Liverpool Care Pathway. As a former sister in Intensive Care I can say without hesitation that the care of the dying has improved significantly since the introduction of the LCP, ensuring that dying patients are 'de-medicalised' as much as possible, allowing a peaceful dignified death.

It would be a tragedy if a few irresponsible and misinformed journalists were allowed to influence use of this excellent and respected tool, to the detriment of the very people they allege to be advocating for.

fairyflan said...

I'm a nurse who has worked in a wide variety of backgrounds from ITU/CCU To Elderly Care. I've cared for many dying patients and distressed relatives during my 40 years as a nurse. I would like to add to the debate.You may not want to read, or listen, to what I have to say.
The Daily Mail gave a voice to the patients and relatives who suffered as a result of the use of the LCP. I know this because my brother's story was published in the Daily mail. It is the use and abuse of the LCP which is being attacked. It is the assumption of many of you that the stories told in the were sensationlist and untrue. They were not.

sharon Kinlin-Martin said...

In respect of the last two comments I would like to know the name of any alternative care pathways that deny patients vital fluids or decides that life-saving care is futile - as far as I am aware there are two versions of the LCP. The one that is being talked about here and a second corrupted version which has been the experience of an unsuspecting public who have been kept out of the loop for almost a decade. There are still large numbers of the population who are ignorant of the Liverpool Care Pathway and if it is something of which its supporters are proud. Why is that?
Why have those who may be subjected to it or might want a say in how they die be kept in the dark until it is too late? The sound of shuffling feet on this lack of transparency on something as critical as how we die is a cause for serious concern and just one of the many indicators of its inherent flaws, some of them much more serious than “poor communication”.
There is growing evidence, and it has been my own experience as the daughter of a victim, that patients, especially those who are elderly and vulnerable, are being placed on it when they are not imminently dying and in the case of my own mother without a terminal diagnosis.
Futile care and the withholding of life-saving treatment is being carried out without discussion or the consent of relatives at the whim of medical staff who sometimes fail to follow guidelines.
When guidelines are not followed on a pathway that ends in death the result can be an “unnecessary death.” The problem is at the moment it is not possible to establish how many “unnecessary deaths” have taken place so far but there are many who think it is substantial and urgent change in the law is needed to stop this.
I personally believe that just one “unnecessary death” is one too many and I think if it was your own mother or loved one you may well think the same. Any attempts to establish wrongdoing as a result of this lack of regulation or appropriate safeguards to prevent wrongful deaths are in reality out of the reach of the majority of grief-stricken and traumatised relatives. Cases of real abuse which amount to euthanasia at best and murder at worst will not be investigated without the single-minded determination from the relatives left behind.
Those who abuse the pathway and corrupted versions of it know this which makes it even more dangerous. What percentage of stories about abuse do its supporters actually believe reach the press? How many elderly widows or widowers or traumatised relatives would even pick up the phone to a national newspaper? The real truth is not about the odd story which is exposed and reported and derided as sensationalist by the LCP's supporters but all those that sadly remain hidden from view.
In today's Sunday Mail (January 6 2013) the Chief Executive of Action Against Medical Accidents, Peter Walsh, has spoken about the “current culture of denial which pervades parts of the NHS” in respect of a move towards a duty of candour. There is also ongoing evidence of a culture of neglect in respect of the elderly and their care. It is against this backdrop which we should be holding up the LCP and recognising why, while it may benefit a few, it remains lethal and a real threat to so many. The initial call for the LCP did not come from the people who use the NHS but from palliative carers according to their peers in palliative care have so far failed to carry out the depth or quality of research applied to other areas of patient care and medical investigations.

val ingram said...

With respect, so many of your comments have come from medical back grounds, what a great pity that those who have experienced problems have not had the opportunity to give their opinions. You may criticise newspaper reporters, but this discussion wouldn't be taking place now had it been for those articles. I don't think badly of the people who have championed this on your blog, but as with everything there are good and bad medical staff. The most disturbing thing is it should be about choice... the patients choice not the NHS practitioners and it has been evident that some families have not been given the choice or the fullest explanation. how cruel to say we haven't withdrawn food and water but if they are unconscious they can't take it...just such an attitude I abhor and fills me with unease as to whether this needs to be investigated more thoroughly. If some people have not died on the pathway it begs the question how many more might have survived if this pathway had not been followed

bobjbrown said...

Thank you for takng this important debate to Westminster. There is very little that I need to say as it has already been said above. In Northern Ireland we invested a great deal of time training GPs and nurses/hospital doctors in the use of the LCP - this was crucial. From my own professional practice experience, appropriate use of the LCP in the hours and days before the end of life aids decision-making, improves communication across the multi-disciplinary team (especially for out of hours teams, when issues that lead to inappropriate hospital admission can occur) and ensures all the key areas of importance are covered with family members.

Susan Morris said...


The Natural Death Centre charity supports the LCP when used correctly.

Matt Wright said...

Well done Glyn. Unfortunately the Daily Mail has a tendency to exaggerate for effect on various issues. I very much hope they haven't dome so over this issue as well. The Daily Telegraph used to be a serious broadsheet but now just mimics the Daily Mail. Please get to the bottom of this sensibly.

Jen Geddes-Davies, Kilsyth, Australia said...

I support the LCP and feel it, and other similar places, are a vital part of our human journey.....those who have written/printed sensationalist incorrect articles against the LCP, should be penalised. As stated by Glyn Davies "The LCP is not about ending life, but about providing the best possible end-of-life care", which surely is what we all would like. I personally know one of the staff at LCP and you couldn't wish for a more caring, loving, experienced, dedicated and knowledgable person to be looking after your loved ones.

Anonymous said...

12As a MacMillan Clinical Nurse Specialist in Specialist Palliative care, I have taught on the LCP & encouraged it's use when appropriate. I have encountered very negative responses from hospital doctors, who seem "scared" of it's use & accusing me of being an "angel of death".
In my experience, with good communication, the LCP is an excellent guideline & has enabled patients & families to experience a "good death". Families have told me how grateful they were to know what was happening & they had the chance to say goodbye/finish family feuds.
On a personal note, my nan was in final phase cardiac failure & the LCP was implemented. She had a very dignified & peaceful death, with all her family with her. PRICELESS.

Anonymous said...

I am a nurse of 35 years so have working knowledge of the pathway. My husband aged 50 died on Ist July 2011 only 9 weeks after being diagnosed with a brain tumour. He died on the LCP in a Marie Curie Hospice in NI.
It was his wish to die in the Marie Curie Hospice and to die peacefully and with dignity The LCP ensured this was the case. Many people believe the scaremongering in the newspapers without ever having any experience of it for themselves. If used properly it ensures the best care possible for patients and their families
Thank you

Heather NI

Anonymous said...

My Dad recently died from dementia. The Liverpool Care Pathway was put into place a few days before he passed. He was agitated and obviously in pain before going onto the pathway and he was no longer able to eat or drink without being sick. The Pathway calmed him and us and helped to make his passing peaceful and with dignity. We were fully informed at all stages of his illness about what was happening and the pathway enabled us to cope too.
If all the guidelines of the pathway are followed properly it is a sure way of helping someone who is about to die anyway pass in peace. Please ensure that all who use this pathway are able to in the correct manner and give training in its proper usage.

Anonymous said...

Hello, I am a relative of a person who died of cancer. No doubt about it she suffered in pain and fear at the end, which upset us all, and due to red tape due Dr. Harold Shipman's evil behaviour (this was referred to by the nurses) these nurses couldn't do more and the final syringe-drive was long and slow in coming.
This lady loved life, was a mum and wanted to be a grandma, and yet in the last few weeks she begged for more drugs to allow her to sleep through her torturous days and nights. They could only give her so much, even though it was not doing enough, and no amount of us begging the drs & nurses would change their minds. You wouldn't treat a pet hamster in that way! Pets get better consideration by us humans in their final weeks /days/ hours. & we wanted her to be in peace & be free to leave this world as soon as she could, like she wanted herself, to be free of pain and suffering. She'd tried 3 years of various cancer treatments to prolong her life, & it had worked for a while, but she was terminal from the start & knew it, and when the time came that her organs were shutting down & it was in her brain the carers at the hospice still kept saying "you're not at that stage yet" !! She knew her own body, & we as relatives could see her decline too, the 'professionals' were wrong, she died weeks after that day! All they had to do was give her a bit more drug relief, it's the least they could have done to ease her suffering so that she could sleep more through the last few weeks. So if the LCP helps do this then I am all for it. I will NEVER get the image out of my mind of that last day, she suffered pain and FEAR (we could see it in her eyes)all day until late evening when the nurses FINALLY put the syringe-drive in and an hour later she slipped PEACEFULLY away. Please support this method /organisation/ care team. Thank you. Mrs. Crosby

Anonymous said...

My dad died on the LCP 28/10/11 after almost 4 years battling colon cancer followed by lung and liver secondaries. He became suddenly ill one Sunday and was admitted to MacMillan Ward Derby Royal on the Monday. Tuesday morning we were called to a meeting with the palliative care team who explained this was probably the right time to let him go with as much dignity, care an lack of pain as possible. We agreed and the LCP began. He died on the Friday having had his last few days in comfort with his family around him. We had time to say everything we wanted and goodbye properly. He fell into a coma for the last part so did not have food or fluids but he was comfy, we could tell by his small reactions to certain family members. I have to say that the LCP helped us to lose my dad with as little trauma as possible in the circumstances.

Anonymous said...

no evidence to bring the largest murder inquiry .????.well mr berry .. people are only just understanding what it is the lcp is doing to our loved ones ...dont hold your breath on a mass murder inquiry in the future... we havent finished getting the awareness out there yet .. actually we havent even started !!!!!!!!!!!!!!!!!
cara@ liverpool care or death pathway

Anonymous said...

to all the doctors earning a living putting patients on the pathway obviously you will support it your livlihood could be at stake thousands have been employed to keep this barbarick money saving pathway, stop blameing the media, the whistleblowing doctors and professors wrote to the press showing there disgust at this back door murder pathway.

Anonymous said...

I have seen the Liverpool Care Pathway in action and putting an animal down at the vets is far more humane. We are not on a slippery slop we are part way down. Doctors and Nurses are not gods or physic, they are being arrogant when they say the patient would not have lived. If the NHS wants to stop bed blocking it's about time the NHS offered people the choice of a quick lethal injection. Better, quicker for the patient, cost effective and done with consent. Dosing people up with morphine until they are to weak to care and denying them the basic human rights to food and water is on par with what Hilter did in the death camps. The NHS is no longer about treating the sick it is sick :-(

Anonymous said...

International Lady how can killing someone by starving and dehydrating them until they die be beneficial to anyone?

Anonymous said...

how can you doctors blame the media when the likes of proessor pullichino condemn it along with loads of others including doctors i find your statements incorrect its not the press its professors doctors and nurses i am sure they should know being hospital workers it was they who wrote to the newspapers, plus you have relatives taking patients off and still alive they were suppose to be dead in 72 hours so whos pulling the wool over our eyes i wonder.

Anonymous said...

to be quite honest doctor i would not let them use this pathway on my cat or dog.

Anonymous said...

thank god, we have some sense still in our country we are now having an independant enquiry into how flawed the liverpool care pathway is proving to be and strong words from lord carlisle a respected barrister, also doctor pullichino a top doctor both insisted the name does not do it any favours plus it should be abolished and a more positive approach to be used, no such thing as if used properly is fantastic, what an idiotic thing to say are they not trained in the first place the thing is what training do you need to starve and dehydrate a living patient to a horrible death with dignity my hat.

Anonymous said...

to mrs crosby, dr harold shipman was put in prison for his evil crimes, and what they are doing at this moment in time is much worse more deaths sorry murders are involved, and have not been brought to justice yet but time will tell mark my word. the wages of sin is death, or used to be bring back hanging for murder.

Anonymous said...

i am a doctor and i would not subject a mouse to this awfull treatment, this is a dangerous tool and most of the doctors dont know how to use it correctly the best way to use this evil tool is lose it in other words abolish it.

Anonymous said...

i get sick of nurses and doctors saying the pathway is a tool and only as good as the person using it, if trained it is fantastic god do they not train them now is it all guesswork why should old age pensioners tremble, they have a reason to worry.

Anonymous said...

lets get this pathway abolished and save money and lives.

Anne Newing said...

719
I am still deeply traumatised at the way my mother was put on the Liverpool Pathway without my consent or knowledge. After a brain haemorrage 10 days before, she appeared to be making a complete recovery, although after the first haemorrage, i had to fight to get her treated and overheard the consultant telling another to give her no treatment as she was nearly 90. However, after the second episode, I was not contacted until late evening. I asked why all fluids had been removed and was told that they would not allow fluids and treatment was being withdrawn. When i asked to see a doctor, i was told that I would have to wait until the next day. The nurses would not allow me to swab her mouth and I had to stay with my mother all night feeling totally helpless. The next day, the doctor told me what I now know to be a pack of lies, that withdrawing water could be of benefit and might even help her recover. I was so naive and so trusting. The newspapers have simply brought to light what is now happening. Elderly people are being considered as a number in this inhumane secular society, and the health proffession should hang their heads in shame.

Anonymous said...

the liverpool care pathway is the crime of the century it should be abolished without a debate its been proven with all its flaws, make sure patients are treated, babies and old and not executed.

Anonymous said...

abolish the liverpool care pathway patients should be fed not starved to death.

reaper said...

i have noticed that the majority of people commenting about this subject are medical staff.my wife was a victim of the LCP i wont go into detail but i want the perpetrators of this genocide before a court of law charged with murder.make all the excuses you like but that exactly what it was.

Anonymous said...

to alice edwards, you are definately telling porkies the l c p has not been going 27yrs which you state. i know for a fact it was being used with no name attached being starved to death 20yrs ago with no morphine then it was experimental like nazi dr mengeli human guinea pigs to the slaughter, are all these professors doctors and nurses whistleblowing for the fun of it no because they are concerned innocent patients are deliberately murdered to make money because they get paid for putting them on this evil pathway, found out by the freedom of information act, and save beds and money.

Anonymous said...

lets stop this evil genocide now and throw the pathway in the mersey where it belongs

Anonymous said...

the liverpool care pathway is a disgrace to mankind, and will be exicuted itself.

Anonymous said...

i am sorry but i just cannot understand how this liverpool care pathway can be allowed to continue with all the complaints, relatives, professors, doctors , nurses, and the national newspapers being given written information from whistleblowers so how in gods name can this be allowed to continue, its disgusting.

Anonymous said...

I fully agree with fairyflan and Sharon Kinlin-Martin.
as only this year my wife was let die in BRH and she was put on the LCP without anyone in my families
Knowledge but.In the tme my wife was in hospitalnot one consultant,doctor or nurse ever spoke to us regardind this.
The first we knew about her dying was on the day she died I received a phone call from the ward she was in and the nurse said " I know all your family would wish to be with her so can you get them on here quickly".
The care and respect given to my wife in the last ward she was in was none existant.
She had COPD.
In my wifes case it was virtually same as Sharon Kinlin-Martins mother. I live in the same town as her.
tobyjug161@sky.com

tobyjug161@sky.com

Anonymous said...

The LCP is murder .
Those involved in the administration of LCP must be charged with murder , and be jailed for life .

Anonymous said...

the liverpool uncaring pathway can not be allowed to continue patients relatives tell you that they are eating and going to the toilets themselves, and are suddenly put on this dehydration and starvation coupled with mind altering procedures ie morphine, midazolam,and other opiates to make sure they will not spend any money to cure or at least help them to live longer, who wants to die early unless suicidal or in extreme pain. i thought people like hitler had gone for good i am afraid not speak out british citizens and get this evil ended.

Anonymous said...

i have just seen an article were the goverement are trying to gag the press to stop them publishing the truths about the wrongdoings that are takeing place in hospitals etc so in all they are trying to cut the freedom of speech, what would have happened if the editors accepted a bribe like on the lazarus pathway they want it kept a secret. only for the mail not fail as doctors mock them we would not have had the pathway scrapped, but watch carefully takeing the name away they could still use the same method undercover backdoor again, the sooner we get coruption out of power the better for all engish subjects, hospitals need a reform from the top, lets get mengalees out alls we are short off is lord haw haw.

Anonymous said...

this is the only country were a doctor or nurse can put a patient to death without approval and get off wth cold blooded murder the name being the Liverpool nasty pathway, to be paid money to put a patient out of this world is corruption and bribary they call it the English disease, brought about by English prime ministers. English citizens wake up it could be you next.

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