Liverpool Care Pathway - to be replaced with what ?

[JugglingFromHereToThere]

I've heard recent reports that the Liverpool Care Pathway may be replaced - as some relatives not happy with the end of life care their relatives have received under the LCP.
But am not sure it will be replaced with anything better.

Basically my feeling is that death is a natural part of our life journey, and I feel there is a lot of potential for better end of life care and care of relatives, as shown by the excellent practices in hospices. Unfortunately such good care is not always available to everyone in all settings (eg hospitals not always so good at managing good deaths for all)

Whilst some relatives would like to see more medication used to hasten death (and thereby lessen suffering) in other recent cases the use of morphine - and placement on LCP - has been criticised (eg Mother of 6 who died in hospice recently)

Personally I feel quality of life is a very important factor and medical care should not only focus on prolonging life but on helping provide good end of life care too.

If the Liverpool Care Pathway is abandoned will end of life care actually be improved in our country ?

[claig]

This will have restored faith in the system to millions of people. We all tend to think sometimes that nothing can be done, that things will continue to get worse. But we must congratulate Norman Lamb MP, the LibDems and the Coalition for listening to the complaints raised over years and doing something about it.

In large part, we owe this to the pressure placed on the establishment by our free press who campaigned tirelessly against it in the face of much abuse and criticism.

We have seen that many government quangos and commissions and NHS Trust leaders on stellar salaries have not been able to protect the people from poor treatment. It has been courageous people like Julie Bailey and the people involved with 'Cure the NHS' who have highlighted what has been happening in our hospitals. Julie Bailey has faced abuse from vested interests and her mother's grave has been desecrated, but it has not stopped her campaigning.

Our free press gave oxygen to the campaigners and we must hope that they will never be gagged to make discussion of 'pathways' the third item or even not an item at all on their pages.

[JugglingFromHereToThere]

Thanks for your post nork - I agree with your assessment of things and glad to hear your father received such good care.

Maybe the LCP has developed a bit of a bad reputation though due to being badly implemented at times, and as the report says sometimes used as an excuse for poor care.

So, as politicians love to do anyway, they want to bring something else in and give it a new name Let's hope that whatever is brought in in it's place is well resourced, and backed up with good training, to really bring about positive change in end of life care in all settings.

I'm finding you have a bit of a strong side agenda claig about the role of the media in bringing about this review of the LCP/ end of life care.

[claig]

'I'm finding you have a bit of a strong side agenda claig about the role of the media in bringing about this review of the LCP/ end of life care.'

You are right, because I think that without the Daily Mail's and the Daily Telegraph's campaigning, the Liverpool Care Pathway would still be in existence. I am glad it has been scrapped, and I think it is very important for us to understand what led to it being scrapped - and chief among that is our free press who refused to let it drop.

[claig]

I think the reason that BBC Newsnight didn't mention it at all last night is precisely because they never reported on the controversy over it much throughout its existence, unlike some of our newspapers. What is mentioned and what is omitted on news channels is significant.

I want full transparency and full discussion on all issues to do with treatment of sick and dying people in our hospitals and that is why I am so grateful that we still have a free press that is willing to challenge the establishment over what they and many people believe is wrong.

[JugglingFromHereToThere]

Fair enough claig, but I think you're probably more against the LCP than I am.

Like some other posters I feel the problem lies in the way it was implemented .... such things as poor training, under resourcing especially of personnel, lack of understanding of end of life care especially regarding issues around hydration of patients at end of life, lack of communication with families, and inflexibility and lack of awareness in respecting individual needs and wishes of patients.

[claig]

'Fair enough claig, but I think you're probably more against the LCP than I am.'

You are right. I worry about what lies behind it. I worry that there was a lack of communication with relatives - why? why keep it secret?
I am shocked about the dehydration, like you.

I was one of the millions who had almost given up hope that we would get change when our major TV news channels did not make a big issue of it. I know that the only reason we have been able to have it scrapped is because of some of our newspapers did not give up and were not silent.

The relatives wrote to newspapers. If they had just complained to MPs at MPs' surgeries and MPs had just mentioned it in the House, do you really think we would have got to the stage where it has now been scrapped?

Articles in our national newspapers, while our other media retained their silence, is what has led to it being scrapped.

I was against it, I am against it and I am grateful that it has now been scrapped.

[JugglingFromHereToThere]

Yes, I think there's a lot of truth in that nork

I think there's a very understandable element of people not accepting death as the final chapter in the lives of their loved ones.

Perhaps we shouldn't all be quite so shocked and up in arms that people die in hospital too (as in current news regarding the 14 Trusts criticised in other recent report)

We will all die one day, but obviously how and when that happens should be as good as it can be, for us and our families.

[edam]

The issue with death rates is that 11 trusts have far more people dying than comparable trusts. Their death rates are way out of line. So it's entirely possible patients were dying when they would have lived were they treated at different hospitals. (In fact this is clearly the case - babies like Joshua Titcombe, for instance, who died because although his mother had an infection, midwives refused point blank to investigate whether he had an infection too. He died from lack of antibiotics. This should never have happened.)

That's a separate issue from the Liverpool care pathway, although linked because one of the key factors in both is staffing. If you only have one nurse responsible for 24 vulnerable elderly patients, it is inevitable that the standard of care will suffer. That nurse only has one pair of hands.

The chief executives of NHS trusts must start to be responsible for the quality of care - not merely blame staff for lacking compassion. Doesn't matter how compassionate you are, one nurse can't care adequately for 24 inpatients.

Over the past 20 years, trust chief executives have been performance managed on how well they do whatever the health secretary tells them to do, and whether they balance the books. Not on quality of care. Failing to employ enough nurses so patient care suffers has actually been A Good Thing for the career trajectory of NHS suits.

[Perihelion]

LCP is best practice if followed correctly. It's the best we have for end of life care, since post Harold Shipman, the regulation and form filling for diamorphine almost rules out helping someone dying that way. Good to stop the likes of Shipman, but means that death is a drawn out affair. Are people who are so horrified of the though of dehydration, even when fluid can be detrimental, calling for assisted suicide ( also, obviously open to abuse ) or what exactly? Do you want fluids administered, so that relatives feel that everything was done? So they didn't give up the fight?
IMO, what's needed, but won't happen is much greater funding for palliative and end of life care. More hospice places where patients are properly cared for and where relatives can stay at the beside of the dying person 24/7.

[frumpet]

I think one of the main problems with the LCP is that although it follows the practice in hospices and by pallative care nurses , it is used in situations where a person may have suffered an acute medical event . In other words families are not in a posistion to come to terms with their relatives end of life prognosis .
I personally have nursed before and after the introduction of the LCP , i believe end of life care has improved as a result of the LCP .
Does it need review ? yes of course ,everything we do in the NHS needs reviewing periodically , we need to look at what works and what can be improved and how .
However i would be devastated if it is simply removed and nothing is put in its place to fill the void , i still shudder when i think of some of the poor bastards who had the misfortune to die pre LCP and the suffering they experienced

[frumpet]

End of life care should always be individualised , the LCP is a tool that is supposed to prompt health care professionals to give high quality care when someone is at the end of their lives .

[busyboysmum]

My dad has just died in this manner, he got to the point where he could no longer swallow so they put him on this pathway. His death was peaceful and serene, he was not in any pain, it took away my fear of dying seeing his death so calm. I think giving him fluids would just have dragged things out for no reason.

[JugglingFromHereToThere]

Some time ago I spent an afternoon in hospital with an elderly friend, we talked quite a bit about our favourite poems, and I offered him some sips of water, but he only took a little. He passed away later that evening.
I hope it will be similar for me when my time comes.

I'm a little concerned to hear that post Harold Shipman it has become harder to administer morphine to the dying. I think I might rather like plenty if I'm in any pain ! I'd be interested to read other views on the current situation/approach.

[JugglingFromHereToThere]

BusyBoys - Am glad to read that your Father's passing was peaceful, though also sorry for your loss

[barbarianoftheuniverse]

My father died this way. It was awful. It took literally weeks and the dehydration was terrible. I didn't understand what was happening at the time but I do now. It is so wrong and cruel.

[busyboysmum]

I think maybe they administered something to speed things up, I was expecting it to take a long traumatic time but it was a matter of days although he hadn't been eating for months so was very weak. I would like a similar death personally having experienced this.

[frumpet]

Nobody should be on the pathway for weeks , its is supposed to be for the final 48-72 hours , in other words end of life .

Dehydration is a difficult issue for so many reasons . If someone has hours/days to live do you really want to try getting IV access ? do you want to give a drink to someone who's swallow is so compromised that all you are doing is effectively drowning them slowly by giving them that drink ? On the other hand if that person is lucid enough to ask for a drink at end of life , what right do you have to deny them ?

As stated above the pathway is supposed to be for end of life , past the 72hr point there should be a full consultant review ( this is stated on the pathway ) .

[frumpet]

I would ask anyone on here who feels the pathway itself is bad to have a look at it , it isn't a secret document , it is easily available to see on the internet.

[Perihelion]

Post Shipman, you still get diamorphine/ketamine/ anasthetic etc, but there is more care I believe that the amount given is for pain, rather than to speed death. Watched my gran die in 1991. Near the end her pain meds were increased massively on the unspoken understanding that it would kill her. Last year when caring for a friend with cancer, I was amazed at the form filling and paper work involved for district nurses and hospice staff for the administration of these drugs.
If I had a choice I'd prefer a speedy death with assisted suicide, rather than LCP. Having seen people with terminal agitation I'd not want to put realatives through that. Although maybe witnessing this is partly what gives some relatives hope for a different outcome.

[frumpet]

Can i just reiterate yet again that the LCP should mirror the care given in Hospices and by pallative care nurse's in the community .

[frumpet]

Oh and please please look the document up on the internet , it is there for all to see .

[northernlurker]

I think a lot of the problem with reaction to the LCP is that we (the public in general) don't know what dying is. We see Gone with the Wind or pretty much any film actually where people are coherent and pain free and still and that is our expectation of death. In fact the dying body can be pretty dreadful and confusion and pain are commonplace. Everybody deserves a good death and the LCP has delivered that for many, many people. I've never yet come across anybody with an experienced understanding of palliative care who doesn't appreciate it. I fear dying people will suffer more not less because of this review but I am certain that my loved ones will not. I know what to ask for and when the time comes I will let them go.