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 ?

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.

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 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

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.

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.

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?

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.

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

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.

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