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?

It horrifies me that, all over the country, there are reports of terminally ill people dying in pain and fear because their relatives are now spooked by any mention of the LCP and refuse to allow them to go on it. And all this is because the Mail and the Telegraph decided to start their campaign not because they genuinely care, but solely in order to sell a few papers. That is, frankly, verging on the criminal.

Claig I fully agree that the patients should be in full agreement of and aware of if the LCP is to be instigated, in fact that is part of the LCP anyway.

The issue I have is around relatives. They should be made aware of the fact their relative is on the pathway, but the problem I have is asking them for consent. This should always be between the patient and their DR if they are capable to make this decision.

I am not allowed to walk into my GP's and ask to see my mothers/sisters/aunts medical notes nor make any decisions regarding their treatment and rightly so. they are adults and any decisions are between them and their GP.

I think bringing relatives into the decision may not always be in the patients best interest. What if the patient wants it but the relatives want everything done because they are not willing to let go, even if it means their loved one suffering? and yes it does happen and more frequently than you would expect.

Not everyone can grasp the full clinical picture and often its an emotional knee jerk reaction to DO EVERYTHING, even if that means its detrimental to the patient and will not save them anyway, just prolong their dying.

meddie, I agree with you. It should be between patient and doctor. Only if the patient is incapable of making a decision, should relatives being asked.

But are relatives always in the best position to make such a decision? Will relatives always know what is best for their relation or indeed will they always want to do what is best for them? It is such tricky ground I really do think allowing them to make decisions is getting into tricky ground.

Would we allow a relative of a patient in resus in A and E to decide Edgar treatment they had?

Relatives should be kept informed but decision making is much riskier.

I think this is a complicated question and we know that there have been some cases where doctors want to end life support for people in comas and where loved ones have challenged those decisions and taken them to court. It is a question of rights and there is no easy answer.

I personally favour rights of patients and family above other considerations in most cases as I think that this ensures that financial incentives or other considerations do not interfere with the best treatment for patients.

I agree with those on here that say that, when used well, the LCP is a wonderful way to bring dignity and peace to those who are dying. I have seen it being used this way, and I would not hesitate to consider it for close relatives of mine if I was asked (if they no longer had capacity), and if my relatives wanted to discuss it with me before making their decision, I would support them 100%.

I also agree that the patient's wishes should be what are considered first and foremost, not that 'the patients and family' deserve consideration above all. claig, when the family and patient have the same viewpoint then considering both works very well. However, as others have stated, family do not always have the best interests of their relatives in mind - sad, but true. Sometimes, these situations can bring out the worse in family and end up with family members arguing about what they feel is best for the patient, and that patient's interests get lost somewhere. I've seen that happen, and it's awful to see. And it's interesting that you talk about financial incentives - these can also make family members behave in a way that can be, quite frankly, abhorrent.

Classic example of the Mail using any and every opportunity to bash the LCP, and relatives not necessarily always being right: www.dailymail.co.uk/news/article-2255938/Grandfather-centre-bitter-right-life-court-case-dies-early-hours-New-Years-Eve.html#ixzz2Goex03T4.

This was a dreadful case, but the poor man was unable to breathe or speak by himself, had had a stroke and suffered multiple organ failure previously, his kidneys were failing and his blood pressure was falling disastrously - yet his family wanted him subjected to dialysis and CPR. It would have achieved precisely nothing and made his last hours hellish. I don't blame the family in any way, but I don't think the Mail is doing them any favours by publicising this case.

Yes it was a dreadful case, but what the hospital failed to disclose was how he ended up being in the sistuation he ended up in, he walked in to there with constipation and nothining else, and the constipation cleared with laxotives, cant say anymore on this at the moment but you will in the very near future

thank you kate it is a very upsetting subject ... may i also point out people have no right to discuss the case of david james ... they dont have a clue how that man suffered or how the family have and still are suffering through the lack of care and dignity with the framework of the lcp

I agree with previous posters though - that some people cannot accept death as a normal part of life or the natural end of our life journey.

The Daily Mail seems very much in that camp to me.

Also I think it's very hard to ask relatives to make all decisions (say if patient is unable to do so) - it's so natural to say please do everything you can for my mother/sister/child

I think we do almost need the doctor to say we have done everything we can now we just want to make her as comfortable as we can

• that sort of thing

may i ask you how are you so sure someone is not worth saving ?

Its nothing to do with someone not being worth saving, its about being realistic about their condition and accepting that they aren't going to make some miraculous recovery and that its just a matter of time until they do die.

' its just a matter of time until they do die'

Time is precious and recoveries do occur. People do get better even when doctors have given up hope and said that they will die.

'?The fact is that there is no scientific evidence to support the diagnosis of impending death and there are no published criteria that allow this diagnosis to be made in an evidence-based manner."

If people are not resuscitated then all hope is removed.

It is worrying for patients that courts can decide to support the removal of potentially life-saving treatment for patients.

realistic ??????? yes lets be realistic for a moment.. as i havent seen any realistic comments on this thread so far on the dangers the lcp posseses ,, and who in the medical profession can determine that a patient is not going to make it ?? actually it would be interesting to know or any other profession for that matter .

so are you sayinbg that a patient who is beyond hope should be so cruelly sedated and given a cocktail of lethal drugs ? how can you know a patient is comfortable in death when the lcp makes sure they cannot communicate no longer .....

juggling .... tell me what is so natural about being given a lethal cocktail of drugs sedated so you can not communicate with your loved

About 2 months into her illness (when she hit renal failure and needed bilateral nephrostomies so 2 bags into her kidneys from her back) my mum, who was very lucid at the time, turned to me and said " do you know what? If I was an.animal they would have put me down by now". And she was probably right.

Her cancer was extremely aggressive and one of the rarer ovarian kind. Her prognosis was appalling and we watched her deteriorate literally before our eyes over 16 weeks. She did rally at the point I mentioned above but was never on the LCP at that time - she was awake and responding to non aggressive treatment.

By the time she was on the LCP she was in chronic end stage renal failure, metastases bloody everywhere and slipped into unconscious. Her poor poor body just couldn't cope. The difference was quite distinctive in her case between her two very poorly periods. I don't think if we had opted out of the LCP the outcome would have been any different. The LCP did give her 3 days of peace, quiet and being comfortable.

dizzy do you not think cash insentives make the nhs act in a manner not always in the best interest of the patient also? what strikes me is the amounts of deaths on the lcp has more than doubled sinced the incentives have been put into place .... this framework surely goes against the ethics of the hippocratic oath .. preserve life not end it

hotstepper....financial incentives have no place with the LCP...on this I utterly agree with you. However, the LCP itself if followed properly is not awful I have seen too many people whose last days were made worse with invasive and unnecessary treatment when it would have been far kinder to keep them comfortable and let nature take its course. I dont mean giving drugs to shorten someone's life but letting them set the pace....eat and drink when they want and have pain relief as needed.
No way should there be any financial incentive to this though.

Hi hotstepper - I merely said that death was a natural ending of our life's journey

I'm sorry if you've had bad experiences relating to the LCP. However I think your way of expressing things has been quite emotive.

Hotstepper - What cash incentives are you on about?

On the contrary, death rates for hospitals are scrutinised very closely. Also, you don't seem to understand the difference between sedation and pain relief.

Anyway, I want you to give me an exact care plan, (you can use Roper, Logan and Tierney as a basis if you like) of what would be so much better then the LCP.

And what drug regime you'd use too.

I'm waiting.

Well the bone scan, the 2nd lot of surgery where they found 2ndaries on her bowel and her thoracic ct scan was fairly conclusive of those areas. Oh and her pain that went on weeks and weeks before we ever got to the LCP point

And the fact her cancer was a sarcoma which spreads like wild fire. She declined further tests because she didn't want to know. She was unable to tolerate chemotherapy. Dear god they tried but her kidneys shut down.

Her pain was controlled by diamorphine which she requested by a pump.

The LCP meant she wasn't bothered by stupid interference every bloody hours which treatment would have been futile and they couldnt do anything about anyway- obs like blood pressure, pulse, oxygen sats - tbh they were the least of her problems.

What treatment would you suggest? She was beyond modern treatment, there was nothing more they could offer,couldn't eat without vomiting, couldn't drink without vomiting. She had no veins left to cannulate - last attempt before LCP took 14 attempts and lasted less than an hour before it failed.
I'm just glad the vein the pump went into didn't tissue so she was painfree.

I dont wish to be so candid but she had terminal cancer. There was never goingto be any other outcome other than a bloody miracle. She was young so maybe that makes a difference - 50 at diagnosis and died 2 weeks after her 51st birthday - maybe its harder when its older people who do rally. But the LCP is there for those at the end of life not just the older generations.

Colleysmill - I'm so sorry your mother had to go through all that.

I'm still waiting for hotstepper's care plan.