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?

When my grandmother had a stroke they fed her water with an added thickener. It can still be done....even with patients whose swallow reflex is damaged.

'As soon as she got an infection, we were told she was dying and asked permission to withdraw food and fluids. This was'nt the case and when I made it clear I didnt consent and was prepared to challenge their judgement they backed down and she recovered and lived on.'

This is exactly it. What about people who have no relatives or relatives who are all-trusting and all-believing in their NHS trust and we have seen some of the disgusting scandals at some of our trusts.

And then you throw financial incentives into the mix.

It needs investigating and I am glad that they are going to do so.

The problem isnt the LCP as such. It is how we value and treat our elderly population. Our society sees the elderly as a 'problem' rather than a treasure.

And we all have an interest in improving how they are treated when at their most vulnerable, as one day they will be us.

My mothers end of life care was first class, with her own nursing support at home, but it cost us £30k. For me it was worth every penny - but most people dont have that level of choice or control over what happens to them

Absolutely it needs investigating....the LCP is supposed to improve people's quality of life while they are dying....NOT send them off. It seems that there is widespread confusion about when it is appropriate to use and how it should be see.

At work this week, I am looking after 2 terminally ill patients whose rooms are side by side One has terminal cancer, the other has end stage COPD and hasn't recovered from their most recent chest infection.
Both patients are dying. Yesterday, with the assistance of a colleague, I provided personal care for both patients. I helped them with their toileting needs and washed and dried their skin. I changed incontinence pads and I assisted them with oral hygiene, using mouthwash and synthetic saliva gels. I helped both of them take sips of thickened water from a lidded beaker. I moved both of them gently up the bed using handling aids and assisted one patient to change position when they indicated that they weren't comfortable.
I administered one dose of sub cutaneous diamorphine to one patient because of severe pain. it worked really well and the patient was painfree within 20 minutes. I also administered a dose of a drug which helps to dry up chest secretions.
I sat with a family member and held her hand while she talked about how she was going to help her grandchildren come to terms with what lay ahead.
I rang a chaplain at the request of another family member and stayed with the famlily whilst the sacrament of the sick was given (I don't practice any religion)

At the end of my shift, when I was ccompleteing my notes, one of those patients was on the LCP. The other patients daughter had specifically asked for her mother NOT to be placed on the LCP and specifically quoted the media when discussing it with our consultant.

Which patient is which ? Who is on the 'death' pathway and who isn't?

Yes, and it is not impoosible that financial incentives may lead to the wrong decisions; decisions that are not in the interest of the patient, but in the interest of the Trusts.

Patients and families have spoken up. Some of the media has listened to their voices. Now a review has been instigated. People won't remain silent. Good on Cheryl for being part of a facebook group. People who stand up now protect us all in the future.

I'm not talking about Mrs Greenwood - I am confident that her case will be fully scrutinised and investigated by the review. If her story is true, those responsible for her care need to be able to account for their clinical decisions. To tar the whole of the LCP as a 'death' pathway because of a few isolated stories reported in a newspaper not known for its impartial reporting of NHS issues, is naive and irresponsible.

Can you please answer my question ?
'what happens when you 'trickle' fluids into the mouth of a patient who is unable to swallow because they are in the terminal stages of their illness? '

'The other patients daughter had specifically asked for her mother NOT to be placed on the LCP and specifically quoted the media when discussing it with our consultant.'

That is why we live in a free country with a free press. It is teh media coverage that has probably led to the review and it is the media coverage that will continue the scrutiny and continue asking questions and listening to teh stories and experiences of families. In the end it is teh media, on behalf of all of us, that will force change to give us all the best treatment.

Of course there should be a review if HCP's are using it innacurately. There should be more training for every HCP who uses the LCP.

But to say it should be banned completely is just as frightening.

We have had the training on our ward because of the type of patients we nurse. We also have dedicated palliative care teams who review and assess our patients who are on a care pathway. It is certainly used correctly and for the right reasons where I work.

As someone has posted above, patients are known to come off it if their condition improves.

Food and fluid are NEVER withdrawn, the families and patient, if they are concious and clearly understand, are informed of the risks of aspiration of continuing with food/fluids. The only time it is stopped is when the patient starts to choke. Then we will stop with the family/patients consent for a short while, then commence intake if they wish.

It is teh media that highlights postcode lotteries and publicised the shocking treatemnt of MP Ann Clywd's husband in hospital. Without teh media, ordinary people would have no voice at all; they would have no chance of being heard and no chance of being listened to.

'I'm not talking about Mrs Greenwood - I am confident that her case will be fully scrutinised and investigated by the review.'

Well I am talking of Mrs Greenwood and extrapolating to the many like her who did not have families who pushed and pushed and gave water themselves. Some of those people, just like Mrs Greenwood, are probably now gone and unlike Mrs Greenwood, they will not be able to plan a worldwide cruise.

People like Claig seem to be picking up on bad care and using that to try to discredit LCP which is a shame as the LCP allows people to have a comfortable, dignified death and who wouldn't want that for a loved one who was dying?

Instead of trying to make out the problem is the LCP why not push for better training and to ensure that mistakes don't happen.

They are holding a review into the LCP because of the terrible cases that have been made public. We will find out, hopefully, why these things have been happening, and hopefully they will be rectified. The Daily Mail reported that thousands of patients are put on it without family consent. This is not right. That is why an investigation is being carried out, and it seems that the financial incentives will also be looked at.

'Instead of trying to make out the problem is the LCP why not push for better training and to ensure that mistakes don't happen.'

Instead of trying to make out there is no problem, let's investigate it and listen to the stories of families whose relatives have been on it.

The media told us about the DNR (Do Not Resuscitate) notes that were on patients' notes without family being aware.

Let's make sure that there is no bad practice going on.

out of interest Claig do you believe everything the media tells you? That seems to be the only source for all the claims you are making. Generally the media aren't known for providing balanced arguments.

Let's have open, public scrutiny, let's declare financial incentives, let's discuss what is going on with DNR notices and dehydration and withdrawal of fluids; let's make sure there are no more scandals of shocking care like there was in Stafford. Let's not stick our heads in the sand and say there are no problems. We are dealing with people's lives and nothing is more important than that.

Well I knew the DNR would crop up

That's the Daily Mail for you!

'out of interest Claig do you believe everything the media tells you?'

Certainly not. I don't believe the Guardian on climate catastrophe and anthropogenic climate change.

But I believe ordinary people, not spin doctors; I believe the Greenwoods and many other families who have had stories printed in teh papers. I don't believe Stafford Trust NHS bosses; I believe patients.

'Well I knew the DNR would crop up'

Do you think the Mail is lying about Do Not Resuscitate notices? You don't believe that people have been put on them unneccesarily without informing their families?

The problem with that claig, and many of the Doctors and Nurses I have had this conversation with all think the same, is that anyone can go to the papers and make assumptions and accusations against the NHS. The more shocking the better, it sells papers.

What the media doesn't do, is report it from the individual HCP's side. We can't comment publicly because of patient confidentiality.

I seen written complaints against some of my colleagues that are outrageous accusations with threats to go to the media. The nurses can give their side during an investigation but it is never made public even when there is proof of no bad practices.

Because of course families never lie, or stretch the truth and they only ever do what is in the best interest of their relative don't they. There are 2 sides to every story and to believe one side without knowing the other is daft and where media often fail because they don't want to present a balanced argument they want to sensationalise things.

Exactly Sirzy

Just as a matter of interest, if a patient (with full mental awareness and capability) requested DNR, would medical staff have to discuss the matter with the family?

'The problem with that claig, and many of the Doctors and Nurses I have had this conversation with all think the same'

Of course they think that, they don't want to be held to account by the people, nbut it is teh people who pay their wages. They don't want to pick up a paper and read of the shocking treatment given to patients in Stafford and elsewhere or hear how furious and disgusted MP Ann Clywd was by teh lack of care given to her dying husband. Well tough, that is why we have a great press that stands up for people and even for MPs like Ann Clywd and tells us what goes on in the service that we all pay for.

' We can't comment publicly because of patient confidentiality.'

When patient's have publicly identified themselves and challenged shocking care, why hide behind patient confidentiality. Patients have to spend years taking these officials to court and then often get small payouts. Let's have a system like the United States that holds people who give poor treatment to account. That will stamp out the scandals that are so frequent in our hospitals. That will ensure that DNRs and LCP cannot be given to patients unless their families give consent.

So which one of my patients is on the 'death' pathway Claig ? Given that a document reportedly makes SUCH a monumental difference to thousands of dying patients every day, it should be easy for you to identify which patient is which surely?

And you still haven't answered the question about fluids........

And with regards Mrs Greenwood, when are the NMC and GMC disciplinary hearings due to be held?