Liverpool care pathway

[stella1w]

Posting here for traffic, not debate,
distraught friend just told her mum, demented, at home with 24 hour care has been put on liverpool care pathway. She spoke to the gp about palliative care thinking it would mean a nursing home and was not consulted about lcp. Gp is refused to let her mum have sedatives or water and my friend is v v v upset and feels this is like euthanasia. She doesn,t seem to know what to do or if she has any rights to stop it. It could take four weeks.
I said if she had doubts she should ask for lcp to be postponed until the children had been consulted and undertood and consented.
What can she do?

"This decision will be explained to you and reviewed regularly." This is the point. The fact that someone is put on the LCP doesn't mean they stay on it - doctors regularly take them off. That is why the reference to the weekend cover doctor is a bit of a fallacy; every doctor who deals with that patient will review the original decision regularly.

hotstepper, of course there are patients being placed on the pathway who have not got cancer. People don't only die of cancer, you know. It has been demonstrated that the report about babies with disabilities being put on it was false. You suggest that the LCP isn't natural, but what is natural about ventilation, CPR, pumping adrenaline into veins and giving hearts electric shocks? All of that is of course absolutely correct when it gives a chance of saving life, but not when all it does is subject a dying patient to an agonising, undignified end.

People seem to forget that decisions about giving treatment to the dying have been part and parcel of medics' jobs long, long before the LCP was even thought of.

you say a patient who is started on the lcp is already semi connsious or non responsive .....am i wrong to believe that removel of fluids will render a patient unconsious ......the lcp is a tool and as the old saying goes its only good if its used by a qualified person .. and the patient is to be monitored regular . tell me what hospital has the time or staff to make sure this is implimented ??? i say that you will find none ... therefore there is no place for this in acute hospitals

'even if we do things well, there will always be families who complain'

Families complain when things are not done well. We will see what the public think of the rantings ofuneducated hack jornalists when journalists report on what happened in the Mid-Staffordshire Trust. We'll see if teh public supports the complaints of the families or believe that things were done well by the healthcare professionals who "worked their ases off in university".

The Daily Mail (not the Daily Heil) said

'Until now, the medical Establishment has contemptuously dismissed public disquiet over the Liverpool Care Pathway'

I think there will now be change.

In a pp someone mentioned that doctors have not been under any obligation to inform families about patients being placed on the LCP, in fact if a patient lacks capacity then under the mental capacity act 2007 a family member or friend who is involved in their care has to be involved in decisions about significant medical interventions (or lack of interventions) unless it is an emergency. If the family and doctors cannot reach agreement it can go to the court of protection. If someone has no family an independent advocate is appointed. I would never want to be in the situation where I was the only one deciding if my mum or dad was to have treatment. I would like to think I would do what was best but I would also worry I would be too selfish to let them go and that is why I am glad that doctors will make that decision and I respect them enormously for having to do so. There are always bad doctors and bad care but that's a different discussion.

Interesting that the Mail has had to correct one of its LCP stories as follows:

A former version of the article described the Liverpool Care Pathway as ?a withdrawal of food and fluids?. We are happy to make clear that the LCP is intended to ease the final hours of patients who are close to death and to spare them the suffering associated with invasive treatment and the needless prolonging of life. Once a patient is no longer able to eat or drink, consideration is given as to whether fluids and nutrients should continue to be provided.

So they managed to falsify an absolutely crucial and basic fact underpinning their entire campaign. And they haven't publicised their correction, they've simply added it to the original report placing it right at the end, where there is very little chance of anyone who was previously misled seeing the correct version. This is why you simply cannot take any Mail report on this issue as reliable unless it is fully corroborated by more reputable sources.

hotstepper, you are absolutely wrong to say that hospital staff don't have time to review the use of the LCP. That is why they have palliative care staff, and that is precisely their function.

'In a pp someone mentioned that doctors have not been under any obligation to inform families about patients being placed on the LCP, in fact if a patient lacks capacity then under the mental capacity act 2007 a family member or friend who is involved in their care has to be involved in decisions about significant medical interventions (or lack of interventions) unless it is an emergency. If the family and doctors cannot reach agreement it can go to the court of protection.'

That is very good to hear, OinkyPig.

What are the penalties for not following this procedure? Because press reports have stated that many people and families were not informed about being placed on the LCP?

'hotstepper, you are absolutely wrong to say that hospital staff don't have time to review the use of the LCP. That is why they have palliative care staff, and that is precisely their function.'

'A survey by the charity found the number of specialist palliative care nurses fell by 6.9 per cent in 2008 / 10, from a peak of 6,155 to 5,730.

The study also showed an average vacancy rate among specialist palliative care nurses of 8.7 per cent ? almost 500 posts left empty ? which is almost double the rate five years ago.'

www.dailymail.co.uk/health/article-2071086/Dying-people-risk-nursing-shortage-crisis.html#axzz2Jnvro0eF

?It is really extremely worrying therefore that the number of specialist palliative care nurses could be falling ? we already know end of life care for the terminally ill is not at the standard it should be.'

claig and hotstepper these patients are already dying - that is my point. It is rare for a patient to come into hospital and be started on the LCP without any attempt to remedy any reversible cause of their deterioration. They are likely to have had days or even weeks of treatment before a decision is made to start the LCP. If a patient is deteriorating despite active treatment - no amount of drugs and fluids is going to save them.

Jollyb, the papers carry stories of people who went on to live a further 14 months after being taken off the LCP by a doctor, and where family provided water which started a recovery which eventually led to the LCP being removed for that patient and the patient was eventually released and was planning a worldwide cruise.

The framework must take more account of patients' and families' rights. A consultant professor has said

?Very likely many elderly patients who could live substantially longer are being killed by the LCP.

?Patients are frequently put on the pathway without a proper analysis of their condition.

?Predicting death in a time frame of three to four days, or even at any other specific time, is not possible scientifically.'

While it may have benefits in some cases, this does not seem true in all cases. Something has to be done about that.

Your quote by the professor about the elderly patients is just his opinion. Other eminent professionals will have a very different opinion. a quick google would find me many quotations from consultants in support of the LCP.

Unfortunately there are going to be cases where the LCP is used inappropriately. Just as there are going to be cases where diagnoses are missed and delayed and operations that go wrong. It doesn't mean that the whole pathway should be scrapped.

I

And also the fact that the papers are publishing these stories means that they are rare and newsworthy. They're not going to publish the story of a patient with advanced metastatic cancer or the patient who had a massive stroke who had a peaceful and dignified death on the LCP.

Yes, there are many healthcare professionals who support it.

But when families write to newspapers of distressing stories and when people go onto to live for an extra 14 months after being removed from it against strong resistance, then it needs looking at.

People who challenge official policy and who take Trusts to court, as in the case of some of the Trusts where scandals have been revealed, are always in the minority. People who campaign against the status quo are always initially in the minority, but they often speak for a silent majority.

I don't think the whole pathway should be scrapped but it needs reviewing and looking at in the light of complaints and criticisms about things such as financial incentives and patients' rights.

They have already changed things by now making it a legal obligation to inform families. I think they will probably make more changes as a result of a review, and that can only benefit patients.

I'm increasingly wondering why claig is posting here. No-one who supports the LCP is saying it is infallible or that it shouldn't be the subject of careful review. The same applies to all sorts of medical treatments and procedures. She seems to be suggesting that that is in some way contentious, but it isn't.

'And also the fact that the papers are publishing these stories means that they are rare and newsworthy.'

If the papers were to publish all of the things that go on in hospitals, there would be no room for anything else. Just read on MN of many people's experiences of poor care. What reaches the papers is only a fraction of what is really happening.

There are good things happening too, but papers concentrate on the bad things and that forces those in positions of authority to hold reviews and make changes that benefit patients.

Susieshoe, I do not think your comment is very helpful, naming those who oppose the LCP, is only going to detract people away from your message and make others seek out why they are opposed to the LCP. I also do not think your comment towards the daily heil as you put it are not helpful, After all if this were the days of the daily heil, you would find a lot more followers of Hitler than there are on your Facebook page and no one could say that Hitler was right, so Could we keep to topic please?

A guestion, do any of those NHS workers who feel they have been under attack by the media, believe that a public inquiry would be a solution to this problem and do they think this review meeting will help to ease the mind of the public over the Liverpool Care Pathway?

Also, surely this fighting is helping no one, rightly or wrongly there is an obvious and fundamental distrust of the public about the use of the LCP, yet no one has taken a look into the future of this. Is this fight going to continue, and if it does, is further harm not going to be caused. Is there any framework which can be put into place, which will reassure the public and the press that those dying are indeed receiving the best quality of care?

It is obvious to me, as it is surely obvious to others, that unless this fight is to continue we need to address the subject fully and find a way forward. If not it will be the patients, those working in the NHS and the public who will continue to suffer? Let us face facts, for we need to, the press and the media and those who feel they have faced an injustice are rightfully or wrongfully not going to stop.

'I'm increasingly wondering why claig is posting here'

Because I beliee in improving healthcare treatment for myself, my family and everybody else. I am concerned by the stories in the press and I want something done about it.

There are people on here trying to shut people up talking about it, trying to stop criticism and debate and reporting posters and trying to get their views removed.

I believe that the treatemnt of patients and dying people is one of the most important issues in our society and I don't want debate to be stifled by people who regard all criticism as worthless or harmful.

I applaud the Telegraph and the Mail for making these issues that politicians have had to react to.

I agree with the Mail

'Until now, the medical Establishment has contemptuously dismissed public disquiet over the Liverpool Care Pathway'

and I think it is time for that to end.

Veritate it is both unreasonable and contentious, would you be happy if a doctor or nurse made a decision which was effectively to end the life of a relative if you thought that they were wrong, are you telling me you would stand by if this were to happen?

I'm entirely happy for the LCP to undergo a thorough review. I just hope that patient care won't suffer in the process.

Claig, I am seeing this, an attempt seems to be being made simply to silence or to stifle voices of opposition, but that is not what should be happening. It only leads on to further doubt and suspicion about motive, This is why all concerned should start to think of a way ahead. Or do we have to take sides on this and fight out some long prolonged war, which in the end will leave everyone demoralized. I have to ask the question Is there any middle ground?

On one side is the public going to have to accept the seeming apparent dictation of the NHS as regards the LCP, but also should those who work in very difficult circumstances, not be appreciated for the good work which does occur. The dividing line, from observation, appears to be the LCP, so what is the solution?

Why should a patient suffer though if say something like a public inquiry did take place? Would it not reassure all concerned, therefore reducing the suffering and feelings of injustice, would it also not settle public opinion and maybe even the press?

Amazinglily, you just can't generalise like that. In most cases of course relatives' views should be obtained and should be carefully taken into account. However, there will be occasions when relatives can't be contacted and urgent decisions have to be taken - the LCP provides that people can be taken off it, after all. There will be occasions when the patient himself has given a prior directive that he doesn't want CPR and painful treatments, or doesn't want to be forced to try to eat or drink. And there will be cases where doctors and nurses can and should make the decision in the patient's best interests. Some relatives desperately hope against hope and want intrusive and painful interventions which will achieve nothing except making the patient's last few hours a living hell. Are you seriously saying that if that is the case the relatives' decision should be paramount?

' I just hope that patient care won't suffer in the process.'

I don't think it will. Stories of financial incentives possibly skewing decision making will be investigated. I hope doctors will be questioned about the reliability of their diagnoses and the outcome will be a safer system for patient care which removes any possible errors or financial incentives.

We have now been granted a legal obligation to inform families. Maybe more good things can come out of a review.

'Claig, I am seeing this, an attempt seems to be being made simply to silence or to stifle voices of opposition, but that is not what should be happening. It only leads on to further doubt and suspicion about motive'

You're exactly right, AmazingLily.
The hostility, the vitriol and naming of brave families and people who set up facebook campaigns to challenge the policy is a sign of fear. What is there to hide? Why fear open scrutiny and an open review? What will be revealed?