Liverpool Care Pathway - to be replaced with what ?

(59 Posts)

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 ?

Perihelion Fri 19-Jul-13 21:00:44

What I found in the hospice was that the staff not only cared for my friend, but they also cared for visitors and relatives. They made a bed up for me, so I could sleep next to my friend, brought me tea and toast. Caught me on the way back from the toilet, to invite me into the nurses office to have some cake and check I was okay. The staffing levels were such that during the night when they thought my friend might die, a nurse/HCA ( not sure which ) sat outside the doorway of the room, to be there if needed.......
What a different experience to being on an elderly ward like Tuna's.
Tuna I'm so sorry that you don't have the staff and facilities to provide the needed care.....and that nurses are often made the scapegoats.
So LCP scrapped in England.....political move that doesn't seem to help anyone seriously or terminally ill. And no alternative given by those so againt it.

NameThatTuna Fri 19-Jul-13 15:48:48

I have utmost respect for what this army of people did for my dad. However, I do wonder whether such care would have been possible in hospital. (At home, my mum was participating in the care, which she wouldn't have been doing in hospital, therefore carrying some of the burden).

Interesting point ipad.

There are a number of reasons why it can go wrong in a hospital. Every member of staff on my ward has had end of life training, even the HCA's (we are a medical care of the elderly ward). Palliative care are involved, consultants and junior doctors, etc.

I can give some examples.

We have 3 areas on our ward; male, female and acute. We have 6 side rooms for the more acutely unwell patients or infectious patients. Whenever possible, we would move an acutely ill patient to one of these rooms to be able to provide round the clock care. The staff to patient ratio within that area is greater, although it is still only one staff nurse/one HCA to 6 patients. In the other areas there is one staff nurse/one HCA to 12 patients.

As you can imagine, this being a care of the elderly ward, we have to wash, dress, toilet, feed and comfort 30 patients between 6 of us. Thats without administering any medication (some drugs, like morphine, will require 2 staff nurses to administer) write up notes, attend various meetings (can be one or two a day) chase up referrals, xrays etc.. The list is endless.

We have the highest number of dementia patients on our ward as they are defined as care of the elderly, although none of us are trained in mental health. We have a dementia study day once every 2 years. Most of our patients are very high risk of falls, confused, wander, shout and/or physically aggressive.

These 6 side rooms are usually taken up by our dementia patients that are a danger to themselves or other patients (we've had patients hitting other patients for example) or by a patient who has an infection.
Sadly, we can't always move the unwell patient to a side room, because of safety reasons or infection control reasons. The unwell patient has to remain on an open ward, with a staff nurse/HCA already pushed for time. With all the best intentions in the world, we cannot provide the kind of care that is needed.
Even in the acute area, if we have the rooms occupied by aggressive, wandering patients, we cannot provide the care the ill patient needs.nity

We do encourage relatives to come as much as possible, we have a dedicated family room so relatives can stay overnight to get some space/sleep. However, if the patient has to remain on an open ward, we are not allowed to let them stay unless that patient is likely to pass within 24 hours. This is for the dignity and privacy of the other patients.

As for the other issues pointed out by other posters i.e stopping fluids, there are medical reason why fluids are stopped. This should always be explained to relatives though. Mouth care is a massive part of end of life care.

Sorry this has become so long winded blush

I'm sorry for your loss ipad

Thanks for sharing your experiences - it's interesting and good to see that some people and families experienced excellent care within the LCP - perhaps most often in hospices though.

ipadquietly Thu 18-Jul-13 23:26:06

My dad died a couple of weeks ago, and had been on the pathway for a number of months. He and my mum were kept fully informed of procedures throughout, and my mum had a dosage of controlled morphine in the cupboard for administration by a nurse. when pain became unbearable.

After he was literally written off by the hospital ('there's no point in us seeing you any more'), my dad's care was managed by the local hospice, district nurses, dieticians and respiratory nurses. The people involved pulled my parents out of the depths of despondency. All agencies communicated about my dad's needs, to give a personalised and caring service. In his last days, dad had a searing pain and requested morphine (he was always allowed to be in control). On the morphine, he was calm, and never regained consciousness. His mouth was moistened by the nurses, and he was made comfortable. A Marie Curie nurse attended on his final night, which provided professional support and reassurance for my mum.

I have utmost respect for what this army of people did for my dad. However, I do wonder whether such care would have been possible in hospital. (At home, my mum was participating in the care, which she wouldn't have been doing in hospital, therefore carrying some of the burden).

I also wonder how much the total bill for care would have been, as so much was done. Could the demise of the LCP be a cost cutting exercise?

jammiedodger79 Thu 18-Jul-13 08:38:54

I am a nurse and have used the LCP appropriatly many times and in my experience it has been a useful guide in ensuring a comfortable dignified death. The thing people don't understand is that at the very end, people's bodies shut down to the point where they are unable to absorb any fluids and the fluids forced on them just overloads the body which is crueler than not giving it at all. If a patient asked for fluids i would never deny them but by the time we have started using the LCP they are usually unconscious and naturally very close to dying in which case extra fluids would make no difference to prolonging life. I believe the complaints are a mixture of the pathway being wrongly used, in which case more training is needed and misunderstood by patients and relatives. The pathway is supposed to be used as a guide, patients can come off it if their condition changes and individual needs should be met.

mybabywakesupsinging Thu 18-Jul-13 01:08:54

The Marie Curie review of the LCP made it clear that the LCP was only as good as the people using it. It also pointed out that the LCP has never precluded the use of artificial hydration, and that any kind of blanket policy on hydration would be ethically indefensible.
The main problems (I think) seem to have been around the diagnosis of dying (which can be hard), leading to people who were not actively dying being placed on the LCP inappropriately.
If done properly there were a lot of very worthwhile "checks" in the LCP which were meant to prompt symptom-relieving actions and other aspects of holistic care such as enquiring about spiritual needs etc.
It clearly has not always been done properly. I'm not sure that's always a problem with the pathway itself - if misapplied and mis-used the outcome won't be good.
A lot of it comes down to caring - if you don't care about the dying then their experience will be bad, pathway or no pathway.

"I am so totally against the prolonging of life for the benefit of the relatives which, quite frankly, a lot of the anti-lcp furore feels like it is."

Yes, I think there's some of that going on certainly nork

norkmonster Tue 16-Jul-13 22:52:52

Agree completely. We how that dying is all clean white sheets and a last few fluttering breaths when the reality can be anything but. People get angry and frightened when their lived ones die, and sometimes that anger is turned against the care givers, occasionally with justification but I would imagine many times without. All this media hype has done is potentially remove the ability of nurses and doctors to use the lcp appropriately and to prolong death for the dying and the living.

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.

frumpet Tue 16-Jul-13 22:31:09

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

frumpet Tue 16-Jul-13 22:29:29

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 .

norkmonster Tue 16-Jul-13 22:27:01

My dad was very agitated. It was unspeakably hard as I didn't know if he was in pain or if he was trying to communicate with us, so so hard to work out whether he needed the extra drugs or if we were preventing him from trying to talk to us, even though I knew that he could not talk. It felt almost as if we were shutting him up with extra drugs to stop our suffering. But do you know what, no matter how awful those last days were, I know for an absolute certainty they would have been so much worse had he been subjected to non-lcp care. Every time he was touched he howled like a wounded animal. The only thing I wished was for him to die quicker. And that's a horrible thing to hope for your parent, or for anyone. I am so totally against the prolonging of life for the benefit of the relatives which, frankly, a lot of the anti-lcp furore feels like it is.

Perihelion Tue 16-Jul-13 22:16:21

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 Tue 16-Jul-13 22:15:46

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.

frumpet Tue 16-Jul-13 22:11:14

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 ) .

busyboysmum Tue 16-Jul-13 21:59:09

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.

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.

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

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.

busyboysmum Tue 16-Jul-13 21:24:28

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.

frumpet Tue 16-Jul-13 21:10:28

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 .

frumpet Tue 16-Jul-13 20:56:41

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 sad

Perihelion Tue 16-Jul-13 19:41:19

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.

edam Tue 16-Jul-13 18:18:04

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.

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.

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