liverpool care pathway

[devonshiredumpling]

i am fed up to the back teeth of reading about innapropriate use of the liverpool care pathway in terminal illness cases. i work in a hospital and all the patients we have had on the pathway have had peaceful and dignified ends . The papers are full of scare stories and does not do justice to the thousands of hard working doctors ond nurses up and down the country who do a brilliant job at adminstering to the patients who are on the pathway. the pathway is only given to patients where there is no hope of life and have satisfied certain criteria .AIBU to want to shoot the scaremongers who do not know what the fuck they are on about it makes me so cross

My dad had lost the swallow reflex due to a series of mini strokes leading to dementia. Thankfully he always knew who we were, it was his physical faculties which were failing - a doctor described it as 'lights getting turned off one by one in a house'. Very true.

He was in a nursing home, and constantly being sent to A&E with chest infections due to the swallow problems. You really can kill people with kindness - the instinct was to give him a drink but it really was making him extremely poorly.

One time he was admitted, and ended up in a renal ward due to lack of beds in any of the more 'appropriate' wards in the hospital. The consultant said there was nothing that could be done for him, he wasn't tolerant of food/drink by mouth, a nasal feeder wasn't a long term solution, and in the consultants opinion, he was in no fit state to undergo the procedure to fit a peg tube to feed him though a tube to his stomach.

I'm one of four of his children. We were all in that hospital, talking to him, laughing, messing about, like we always had throughout our family life. If it was touch and go for him overnight, at least 2 of us stayed with him. We loved him, he was our dad.

The nurses on that ward spoke out. They thought the consultant was wrong, and they got us family in to tell us. They thought my dad had a quality of life, he had us, and so it was worth a punt with the peg tube. We had just taken the consultants word for it so were astonished. They fitted the peg tube, it went well. On discharge they worked together with us to find him a home that could manage the peg tube, and get him on the NHS care package that actually facilited a move to a hospice.

He was there for a few months. Those angels on earth really did absolutely everything to ensure that he, and we his family, enjoyed his last time as best we could. But when he got really poorly again he wasn't thrown back into hospital, but allowed to slip peacefully away.

The nurses were allowed to disagree with the consultant. They knew the ultimate outcome, it wasn't good, but they were allowed to give their opinion to buy us a few more months with our dad, in a place where they knew, when the time was right, he would be allowed to slip away with dignity.

The point I'm trying to make here is that in this situation, there are a team of people involved in decisions, all keeping a check on each other.

Bless them for allowing us to be with our dad just a few months more, but in a place that would allow him to pass in peace. The system works just fine. I am for it.

Growlithe "there are a team of people involved in decisions, all keeping a check on each other"

This is good but when the initial decision may in a few very rare instances be flawed? what happens? I can fully appreciate that some families just cannot accept that their loved ones are dying and whatever the docs say will refuse to accept it and question the inevitable

What are the actual stats to do with putting on and taking off and reputting on the LCP?

zebra I hadn't heard of the LCP until this thread, but thinking back to my dad I think he must have been on it, they just didn't give it a name IYSWIM.

The nurses did think my dad could tolerate the peg tube, even though the doctors initial thoughts were that he couldn't. I think they were driven by the fact he had a large family around him and so would still have some quality of life, even though he was in a pretty bad state. So the initial decision was overturned.

But when he was allowed to slip away and not just sent back to A&E, well that was right as well.

The end of life is such a grey area. I mean, my dad was only going one way, so it was just a matter of having a few more months with him.

We are all only going one way and a few more months are important.

I am glad the right decision was made for your Dad Growlithe. You sound a lovely family. To die at home or where you want surrounded by your family and supported by caring medical staff that is the ideal I think.

This seems to have become its new health obsession alongside cancer , horrible freak things that happen to children or pregnant women . Always with a heavy dose of bias and if possible a subtext of having a go at medical staff or Nhs.

Gigondas I am heavily in favour of the NHS and thank God it has been there for my family, I am in almost daily contact with health staff and value their experience and skills and professional input. I would hate our health system to go the way of the USA. I do not have a subtext . I just want to know more

I said upthread^^ that I have had one Ok experience with the LCP and one bad experience (not a member of my family so maybe a bit more objective?) that makes 50:50. This is the problem with anecdotes, someone's individual experience, be it reported on here or in the daily mail (which I have not read but assumes it is reporting relatives who have not been happy) is that these experiences whilst important and relevant to the individual may or may not highlight deficiencies but should not on their own be used to reach a conclusion.

I will check now the original references given up thread to see if I can find any info on the independent monitoring and evaluation of the LCP and the stats relating to changes in original decisions.
Until I am better informed I am keeping an open mind.

Thanks MonthlyChangeling will pass this onto friend.

I don't understand how, if you fully understood the LCP you could be against it. It is an amazing tool - when used correctly

This is the issue I feel, those of you who have had bad experiences, its not the LCP that is to blame but the poor interpretation and inappropriate implementation of it, surely?

I wish my nana had had the benefit of it when she died, Instead i had to watch her in pain for hours.

I think the biggest problem is probably that death is so taboo in our society that people tend to know nothing about dying until it happens to them, or someone close to them, and no-one really knows how to talk about it. That means that relatives of people put on the LCP are generally totally out of their depth; and it's hard to ask the right questions about something you don't understand. If someone said to me, "Tell me what you think about cosmic inflation and the shape of the universe? Oh and 3-manifold of comoving space? Have you got any questions?" I would feel panicky and wouldn't know where to start... And that's how most people feel talking about death and the LCP :(

The other thing is that families tend to be much less involved with their elderly and dying relatives these days. When my father was dying last summer, I saw him daily for the last weeks, so when he was admitted to a hospice and the doctor told us he was being put on the LCP, I was expecting it. On the other hand, my bro had only seen him once that month, and the last time had been a fortnight before, so he was deeply shocked; and when our dad died within 36 hours of being admitted to the hospice, he couldn't believe it.

Relatives are generally uninformed, shocked and scared in the face of death, so it isn't surprising that they can misunderstand the LCP when they're struggling to make sense of what's going on. Personally, I wish we could start talking much more openly about death, right from childhood. If it was up to me, I'd add end of life care to the school PSHE curriculum...

Zebrafinch - this link may be useful :

www.liv.ac.uk/mcpcil/liverpool-care-pathway/

My dm was on the LCP.

She had a rare form of dementia (result of a brain trauma) that meant that although she recognised us and had her memories, she lost her character, the swallow reflthe ability to talk, the swallow reflex and the ability to walk.

For a long time we tried to force her to eat when she didn't want to. Eventually I asked my dad why we were forcing her to eat when she was absolutely miserable. :(

We did all we could to make her comfortable - but it was still a horrible time. :(

It was still, however, the right decision.

Thing is, and I've only read the OP, a lot of people in this society are terribly frightened of death, even if their loved one is living a life of misery and pain, they try to hang on.

Believe me, I know how hard it is, we had to let go, of our child. Because a) she was going to die no matter what b) that end if her vent had not been turned off was not going to have any dignity or peace for her and she would have possibly felt pain from it.

I think the chief problem is that people are afraid of death, even when it comes at the end of a terrible illness or condition, and this is at the core of scaremongering.

I agree, flow, and if you think that mishaps aren't made in the US, GUESS AGAIN!

Elderly people are not on private health insurance, they're on a socialised form of medical provision known as Medicare.

It's expensive to run and administer, more so now people are living longer.

If you think it's some kind of utopia for the elderly there, you are very much mistaken.

Having trained palliative care professionals alongside the people who set up the LCP, the recent press coverage of it is disgracefully misleading.

The motivating principles behind the establishment of the LCP were to share palliative care information which was otherwise not widely known in the general medical community so as to benefit the patients and to raise the possibility that more treatment is not always in the best interests of dying patients. The LCP is not one thing and certainly not the same thing for every patient but rather a set of guiding principles that help ease what can be a painful, stressful and undignified time for many people.

Thanks Sassy interesting to see in your links the various research projects on evaluation of the LCP and evaluation of relatives experiences. I cannot see from just the titles the population covered by the research. I guess that if a service is registered to use the LCP then there is some central monitoring and evaluation even outside these research projects?. If any family has had a negative experience then a complaint will be made and it will be picked up from the local area and collated somewhere centrally? So I would expect the programme described in your link does not just share good practice but learns from any bad practice too.

Can I ask is this what happens in hospices?

My dad had wonderful end of life care in the week he spent in a hospice. I simply cannot fault them, my sister and stepmum were both allowed to sleep in his room. He was with family 24hrs a day in the last week.

They gave him huge amounts of pain relief, especially in his last 72hrs when we knew his body was winding down and he was in pain whenever he was concious. I'm not sure what happened with regards to fluids and food, although I know he had some chocolate in that last week.

I am eternally grateful we got him in there and he didn't have to spend his last days in a hospital ward with visiting hours. We were involved and kept up to date with all of his care, and we asked (and got answers fast) when we weren't sure about something.

I wish there was more beds in hospices, they are so much more geared up for this sort of thing.

IMO YANBU. As others have said, the care plan or "pathway" is only as good as those doctors and nurses who are delivering it.

There are so many hospitals, doctors and nurses that it only takes a tiny, tiny percentage of bad ones to generate plenty of shock & horror stories for the likes of the daily mail.

Plus it is a tough one anyway, medical treatment has advanced so far that it can keep many people alive LONG past the point at which they should have died............ just because an intervention to prolong can be done doesn't necessarily mean it should.

Meglet the pathway was created by hospice docs (and other medical professionals) to share the hospice expertise with end of life issues outside of the hospice because not every patient has the chance to be looked after at a hospice.

I am very glad your father got appropriate care when he needed it.

We have used a version of the LCP in ITU for quite some time now and it is a great tool for a dignified death in that setting. Stops the all the incredibly invasive and painful interventions that we tend to do in critical care so patients don't spend the last days of their lives being poked with sharp needles, having various tubes in various places, having their ribs broken through CPR etc- I am livid at how it has been represented in the mail. Totally agree that the pathway is only as good as those staff using it, therefore problems tend to come from not the pathway itself but the way that substandard staff implement it.

I am livid, too, Katy.

Our child died in PICU. I saw our consultant shortly after she developed the pneumothorax that killed her, a byproduct of the ventillation and her failed lungs. She called in the most caring doctor.

He did his best to make her end as dignified as possible. She died in our arms.

He stayed until 3AM, she died at 11.30PM the night before, and was back again at around 8.30 the next morning, not on duty, to personally deliver the signed form we needed to take to the council to register her death and sat with us to look at vid clips of our child.

People really must understand, that when someone is as ill as that, in ICU, on vent, they are 99.9% of the time already dead, only the machines are keeping them alive.

And that sometimes, you must let them go for them to have any dignity at all in death.

It is not killing them off, or they need the bed or what have you MOST of the time.

Even these cases you read about in Daily Fail, if you knew much about how critical care works, you'd know these people have no chance of survival and need to be given dignity and respect to leave this life.

All these, 'They killed my 90-year-old mother' with end-stage metastatic cancer who was on a vent and in multiple-system organ failure for a week, wtf? Look, sorry, but cancer and old age killed your mother, not pulling off the vent of the LCP.

Knowing what I do now, if either of my parents wound up in such a situation, I'd be asking if there were some way he/she could be transported to a hospice rather than continuing to subject them to treatment I know they wouldn't want (thankfully both of them, in their early and late-70s, having Living Wills, which are binding in their US state, and we have a system of medical POA in place to pass from one spouse to the other or to me in the event the other spouse is deceased) and which will not save them.

Exactly. I saw a case reported recently which featured the LCP and an elderly woman with diabetes, ulceration and infection. People in that condition die. Some people will live to 101, many won't. Being dead, for the patient, is not the worst thing. Getting to that point can be.
I spent some time a few years ago visiting an elderly woman from our church who was admitted to the hospital I work in. She had pretty catastrophic heart problems and spent her last 4 months or so in and out of hospital. It was clear the end was near but I assume this was prior to the use of the LCP in identifying and supporting the dying because nothing seemed to change in her management. The busy nurses on the elderly medical ward did not identify that she was close to death. I went up to see her one lunchtime and tried to talk to her. She was very still. I waited for a few minutes then went out to the nurses. I described what I had seen and the nurse rolled her eyes at me saying she had been very agitated all morning. We went back and the nurse realised she had died. Of course then they were all quite upset and shocked. That woman died alone, a predictable death. Had I not gone up to see her in my lunchbreak I'm really not sure how long it would have taken for them to notice. That's not what should happen ever.
Woring in a hospital has given me the opportunity to see many families reacting to difficult situations. I know what I will aim for when I have to support my loved ones at the end of their life.

True enough, Northern. Can't think of any of these scare stories in which the person wasn't someone who wasn't elderly with very serious health condition(s) that are and can often be fatal.

Ever read 'Confessions of a GP'? The person(s) brought up very elderly patients or their families, 'What can be done to improve my/his/her heart condition besides these meds?' Well, um, nothing, the heart is over 90-years-old.

I think it all harks back to what flow said in that death is still very taboo in this society.

I agree with the comments regarding discussions on death, we should be more open about something which is inevitable for all of us and let our loved ones know what we would want in terms of hospital treatment , funeral arrangements etc before we start deteriorating. we should all consider making a living will.
I am going to encourage my friend to make a complaint to the local service. I am not sure if he has done so already I think he is still traumatised by his experience. The reputation of the LCP (and the list of supporters on the links I have been given contains very impressive, caring, professional and charitable bodies) may be diminished because of possible poor implementation locally.
I hope there a system in place to feed back any local complaints to those who are monitoring and evaluating the LCP?

thank you booboostoo. The hospice is my only experience of someone dying in a while being cared for by medical staff (as opposed to elderly relatives dying suddenly at home).