[Closed] End of life care - Is this right?

I think it is this: Liverpool Care Pathway ([url= https://en.wikipedia.org/wiki/Liverpool_Care_Pathway_for_the_Dying_Patient ]https://en.wikipedia.org/wiki/Liverpool_Care_Pathway_for_the_Dying_Patient[/url])

No it's not right, it's ******* cruelty on an epic scale that we wouldn't put our pets through but the hospitals hands are tied. The people you need to be angry with are not the medical staff it's the politicians that voted and the people that campaigned against the right to die, sanctimonious self righteous bastards every one of them.

the hospital are witholding medication

Presumably not all medicine. They'll be palliating her.

You are in a slightly difficult situation, as I doubt you are next of kin?

ie the staff potentially can not disclose any of the medical history with you?

The person who is next of Kin would need to speak to the medical staff, and by that I mean a doctor, and preferably not a very Junior Doc.

Sorry to hear this about your gran mate.
but if she hasn't

regained conciousness and is not likely to.

Scott,

Firstly, sincere condolences about your gran. Even when people are old and have lived a long life, it's still difficult to see them near the end.

I'll try to answer your questions regarding your gran's care, but I would advise you to speak to the doctors looking after her as they will obviously be able to give you specific information as it pertains to her.

This is (unfortunately) a common way for older people with dementia to die. When someone is at the end of life, our focus moves from trying to make them live longer, to easing any pain, agitation or suffering that they may be feeling. The Liverpool Care Pathway (LCP) mentioned above is just one way of formalising that.

When the patient is unconscious and frail like this, the body actually doesn't need much sustenance or hydration. In addition, providing these things actively for the person may actually cause more suffering than not providing them - e.g. multiple attempts at intravenous cannulae for fluids, a nasogastric tube for feeding etc.

Some hospitals give fluids through small subcutaneous needles under the skin, but there is no evidence that this actually rehydrates the patient and I personally don't prescribe this as I think it's just treating myself and the family rather than the patient.

The hospital are not so much witholding food/water/medications, just not actively instituting treatment that isn't going to change your gran's outcome and may actually cause her more suffering. They may also not be doing regular blood pressures etc, as knowing those numbers won't change her management.

They should still be caring for her, keeping her clean, turning her to prevent pressure sores, and assessing her levels of agitation/pain on a regular basis. They will also be able to give subcutaneous injections of sedatives/painkillers if she is in pain or agitated. These are the things that I would ask about when you next speak to the team looking after her.

Best wishes,
Hannah
(a junior doctor who has had this discussion more times than I would like, but who believes in peaceful and dignified deaths in hospital)

Presumably not all medicine.

All her usual meds. They've started to give her morphine as she was 'showing distress'

surely it will only allieviate her situaion by expediting her end of life, she's unconciousness so not suffering, sad as it may be.

I'd rather they stuck a pillow over her face than dehydrated her into kidney failure and then the morgue.

So why give her O2?

Edit as crossed posts with Hannah and had a read of the LCP. Shocking, it's almost inhuman.

If a vet did that to my dog I'd be having some stern words with them.

So why give her O2?

It's a fair question. It's not as invasive as other treatments e.g. IV fluids, NG feeding etc so shouldn't be causing her any distress on its own (unless it was drying her mouth out), but I wouldn't give it unless I was using it to alleviate symptoms of breathlessness etc that was distressing the patient.

Sorry to hear this and accept my condolences, I think legolam has said everything from a medical point of view.

My two pennys worth is this, if she goes before Christmas don't let it tarnish Christmas for you in the future. My Dad died very close to Christmas when I was a teen and it spoilt this time of year for ages until I got my head around it.

Similar situation but different country. France.
My nan is 98 and had stroke a few weeks ago.
She is semi conscious but can't move or talk.
She has a drip to keep her hydrated but no food.
Doc said that she would be in big pain if she wasn't getting any fluids .
She hasn't eaten for 8 days now.

Hannah, that's one of the best and clearest explanations of palliative care in this situation that I have seen.

Scott, this is a bloody awful time for you. You will be hurt and feel that you cannot help someone you love. Frustration can become anger. The anger is not always directed in the right direction. Sit down and have a good cry mate. But accept she is going and say your goodbyes.

Hydration does not seem to clearly prolong life or usually get rid of discomfort. Her comfort and dignity are all that matters here.

We've mainly moved away from the LCP, and if you're interested there is a report from NICE which has just come out and tends to suggest more in the way of hydration measures, but it's only really if it helps comfort. Patients should be assessed on a case by case basis, and a lead relative should have clear discussions with someone in charge.

Sorry for your impending loss.

Legolam/Hannah Wonderfully put, you give me faith in our next generation of medics. I hope your colleagues are half as caring as you.

OP, please don't see it as cruel. The hospital will be doing all they can to make your relative comfortable. As counterintuitive as it sounds, there is no clear evidence that giving token fluids/nutrition in this situation will make the patient more comfortable, and a strong body of opinion that it may actually prolong suffering.

I'm going to stick my neck out here and say that I think that the LCP was a really useful pathway in the treatment of patients at the end of life and I think we've taken a step backwards recently with all the negative publicity.

All it did was formalise how to care for a dying patient for the nurses and junior medical staff. It made sure the nurses did regular checks and turns on the patient, even if they weren't doing "obs". It made sure that sedatives, anti-sickness drugs and painkillers were available for the patient so that, if they got distressed in the middle of the night, they didn't need to wait 40 mins for the only available doctor to prescribe them. And it made sure that the necessary discussions were had with the patient and their family regarding their care and what treatments were or were not wanted.

EDIT: Thanks chaps. As I said, I've had this discussion many, many times with relatives (am a cardiology/medical registrar) and I genuinely believe that patients receiving palliative care should have a peaceful and dignified death. I feel a small amount of job satisfaction when we are able to do this properly (even though I'd really rather people didn't die!) and I think it's just as important as all the big fancy life-saving procedures that we spend years training to do.

Hear hear. the vilification of the LCP is one of the worst examples in recent times of government/clinical policy decision by Daily Mail outrage. It was horrifying.

I knew I was right to ask on here!

If I didn't have first hand experience that she is in a really terrible hospital I would have more confidence that she is getting what she needs.

Hannah - thanks for your input/advice. It's very much appreciated.

Scott,

my sincere condolences. I know what you are going through. I buried my father on Wednesday who died of a massive stroke at 70. His end of life treatment was pretty much exactly as you describe. speak to a Doctor and get them to ensure that they are doing everything they can to make her comfortable and not in distress. try and also get a side room (if you aren't in one already) so you can have some privacy in the last few hours and days. in a way an ending like this can be a blessing as you can 'prepare' and say your goodbyes

thoughts with you at this difficult time
Dave

Interview on Radio 4 earlier this week, Liverpool Care Pathway should no longer be used and if you see LCP on a patients notes, challenge the hospital. There's a new individual care plan approved by NICE or whatever they're called today.

Not in the health system myself but the person being interviewed was clear about it no longer being used, they were pushed about hospitals definitely no longer using it and were non-committal, as they could not guarantee everyone knew yet.

Here's the link to the NICE website

http://www.nice.org.uk/news/article/new-guidelines-to-improve-care-for-people-at-the-end-of-life

Sat with my mum in this situation for days. They said we could swab water onto her lips for comfort but there was no escaping the fact that she was being allowed to die and there was sod all we could do. since she died in 2008 we've discussed between us the opportunities we had, with the pillows there and no nurses to stop us, but no one dared. Would have been far more humane, if illegal I guess.

When my gran was sick last year it felt like the hospital were pushing for a do not resuscitate consent. Many of the issues she was having was that she wasn't getting enough food or fluids. She is pretty obstinate normally so I can only imagine what a sick, confused and slightly angry version of her was like. After a fair amount of push and arguing from the family she got treated and now is going strong on a cruise for Christmas.

I can understand that resources are limited and policies are made based on this but I though a family member had to sign off on any treatment that withheld fluids/medication...

I can understand that resources are limited and policies are made based on this

That's really not what the policy is about.

Its a really difficult situation,

We've been through it twice this year, an uncle and the father in law.

Both massive strokes- occasional fleeting glimpses of their previous selfs which only serve to add to the pain.

Loss of swallow reflex meant they had to be fed glucose by nasal in the short term and we were offered a PEG stomach pipe but by then it was clear recovery of any quality of life was impossible.

I feel the problem is it only becomes apparent no recovery will be possible when the patient has become dependant on the medical support, so rather than them passing natuarly you have to make that decision.

Very stressfull for you and your family, you have my thoughts.

It can be upsetting for the family Hannah has just given a fantastic description which is all the family often want to hear.

Thoughts with you and your family ScottChegg.

sorry to read your post op , This was my situation with my dad a few years ago , once the decision was made all support and medication was withdrawn he was in a comma so no need for painkillers his intensive care nurse kept his lips moistened but that was about it . It was in many ways a relief to see him without all the machines. it took about three days for the inevitable end to come. I was very touched by the obvious sympathy and dignity of the staff who even arranged us a private room for him for the last day.

the actual medics above have covered the details better than i could there comes a point when it is kinder just to stop trying to delay the inevitable and provide only pain management and comfort.

It's a horrible situation.. I went through a similar thing with my mum.. Car crash, internal damage. Septicaemia.. Amputation..

I guess it's a legal thing.. It's more humane to deliver a lethal dose of painkillers.. But it's also murder.. By simply withdrawing treatment your not actually killing someone.. Thankfully with my mum she died within minutes of withdrawing treatment as she was in a pretty bad way .. The senior doctor took the family aside and we all basically agreed to end the suffering.

But to starve someone to death.. That could take days.. It sounds pretty.. I dunno.

Thanks, Hannah.

But to starve someone to death.. That could take days.. It sounds pretty.. I dunno.

I just came back to say that I really don't think that this is what "we" are doing. Patients at the end of life don't have huge energy requirements and therefore don't really need food/sustenance. In the vast majority of situations, the patient succumbs to whatever disease had made them poorly in the first place - in this instance, dementia.

Hand on heart, I don't think I've ever looked after a patient in this situation where I thought I was starving them to death, either when I've been involved in withdrawing care or not instituting feeding in the first place. Personally, I don't think starvation is a humane or dignified way to go, and I don't think you'd find many doctors who think that it is acceptable either.

When my elder sister was dying with MS in Sheffield Hallam hospital they put her on this Liverpool pathway and withdrew fluids and nutrition. I went to see her and was shocked to see that her drip was empty and her urine dark brown like brown ale. She was desperately thirsty and kept asking for water so I gave her a few drops, which she promptly inhaled as she had lost her swallowing reflex. She started to choke and the nurses came tut-tutting, drew the curtain and sucked out the water, I didn't see what they did but I heard it and she was suffering terribly.

To my eternal, massive shame I failed to defend my sister by insisting they gave her water. She died a couple of days later. I can never forgive myself for that. She would have died anyway but giving her fluids would have been the smallest mercy and would have made no difference. My suggestion is that you go in and make a big fuss and insist that they give your Gran water at least.

On second thoughts no I won't reply.

[quote=Drac ]On second thoughts no I won't reply.Sometimes it's just not worth it.

I generally find that the people who've undergone extensive training are often far more qualified to deal with things than the layman.
Unfortunately those qualified people may not always be the best at adequately explaining the reasoning behind their actions but rest assured these sort of things aren't the product of a whim.

Really sorry to hear of your nans situation and my best wishes to you and your family.
I have a story of an elderly friend who had his regular meds, food and water withheld for days after a serious accident. After insisting that he deserved a chance and should be treated fed and watered he then went on to make a full recovery. I am sure this would not be the case with your nan and feel really bad for mentioning it on your thread but for the above reasons do not agree with the Liverpool pathway scheme.

My mum went through the same though she was only 73. Alzheimers diagnosed nearly ten years ago meaning she hadn't recognised me for the past three years, a stroke 2 years ago leaving her paralysed down the right hand side and unable to move except through a hoist and then another stroke 6 weeks ago leaving her unresponsive and with pneumonia. Antibiotics did not have an effect on the pneumonia so they were withdrawn and then I was asked if the way forward should be to withdraw everything and simply treat her with morphine to aid her passing pain free, which the consultant was recommending. Horrendous decision to make but she was a very active person before and would of rather jumped off a cliff than be as she had been for the past 2 years let alone fully unresponsive. She passed away nine days later very peacefully and not in any pain with my wife and I by her bedside. There is no way, if she had seen this coming, that she would of wanted it any other way and i know that thought will win the war of thoughts in my head, but it does not mean it is winning the battle at the moment. It is a horrendous thing to have to go through/witness and my thoughts go out to the OP.

I tend not to post personal stuff on here but I have recent experience of this and have played it over in my mind many times.

My mum had a massive stroke which left her in a very low state of consciousness, basically in a very deep sleep. About 3 days after the event we sat with the docs and they explained that there was no possibility of improvement and they proposed / intended to remove any life-sustaining intervention. LCP basically.

Because she had previously been in good shape, she lived for a further 16 days. She was given various drugs to ensure she was not in pain.

I'm fairly certain that in mum's case she didn't suffer, but I'm upset that she had to lie there for so long before she passed away. The doctors decision, the care and dignity with which she was treated, I don't have a problem with, but it does bother me that we can't hasten the end in this particular situation.

Sorry to hear what you are going through.
Out of interest on the above recent strokes had any of the patients been on Wafarin and then changed to Rivaroxaban?
We went through the same as the OP but my mum; at 67, survived but with bad stroke side effects, i.e right hand loss of movement, short term memory issues, double incontinence, not realising she needs feeding and fluids, etc, now permanently living in a nursing home.

The simplest explanation I remember was from a Macmillan nurse...
It's not that the patient is dying because they're not eating and drinking, it's that they're not eating and drinking because they are dying.

Take care OP (and others in similar positions).

All the best to you ScottChegg. We had the same with my grandmother... No chance of a recovery, but they could keep her alive pretty much indefinitely. She had a living will and had discussed end of life with my dad so that took out a lot of the potential heartache though.

In her case, things were, sped up a bit you could say, because she had a doctor who was willing to do that, and man am I grateful to that doctor. But the slower withdrawal of feeding etc would still have been a kindness. We're way past the point where we should keep people alive just because we can but ethics are harder than science.

wilburt - Member

Its a really difficult situation,

We've been through it twice this year, an uncle and the father in law.

Both massive strokes- occasional fleeting glimpses of their previous selfs which only serve to add to the pain.

Loss of swallow reflex meant they had to be fed glucose by nasal in the short term and we were offered a PEG stomach pipe but by then it was clear recovery of any quality of life was impossible.

I feel the problem is it only becomes apparent no recovery will be possible when the patient has become dependant on the medical support, so rather than them passing natuarly you have to make that decision.

Very stressfull for you and your family, you have my thoughts.

Very similar situation with my mum a year ago. We had trouble dissuading the doctors from giving her a PEG. After many discussions, with us (her kids), plus other friends and relatives, they relented.
Only lasted a couple of days in the lovely nursing home she was moved to but she seemed reasonably comfortable. Many pillow-related thoughts in the last hours.

muppetWrangler - Member
No it's not right, it's ******* cruelty on an epic scale that we wouldn't put our pets through but the hospitals hands are tied. The people you need to be angry with are not the medical staff it's the politicians that voted and the people that campaigned against the right to die, sanctimonious self righteous bastards every one of them.

This.

Most of the rest of this thread is just cant. I dread becoming ill in this stupid country as it will try to keep me alive in some unbearable state rather than allowing me to die with some dignity.

Britain sucks for all sorts of reasons, and this is very much one of them.

**** that. If I'm at a point where I can't wipe my own arse and the govt want to take my house to put me into care and eventually starve me to death I hope I have the opportunity to buy a shedload of vodka and aspirin and sort myself out.

I leave doctoring to the doctors, so can't comment on the best way of letting people go, but if I get the chance I'd sooner go on my own terms.

Trouble with a stroke Wrecker, is that the change from being able to wipe your own behind and not, can take a split second. After that you may not be able to be able to swallow or speak never mind pour Vodka.
End of life care is free btw, so your home is safe, not that it would be of much use.

I understand, valid points. I did say if I had the chance/opportunity. I have an agreement with a friend about this so I hope I lose it first!

My wife is a GP and up until recently a Senior Palliative Medicine Dr at a Hospice.

I think Hannah has been very clear and explicit about what the pathway does and why. Please trust the medical staff at the hospital. Whilst it seems to go against our laypersons common sense. They are trained and they are doing their utmost to make sure that your Gran has the most dignified and pain free death possible.

I think Hannah has been very clear and explicit about what the pathway does and why. Please trust the medical staff at the hospital. Whilst it seems to go against our laypersons common sense. They are trained and they are doing their utmost to make sure that your Gran has the most dignified and pain free death possible

I've no argument with any of those points but I would add to that post that we are only able to be as pain free and dignified as the law will allow. It's the law that needs to change.

[edit]
To the OP, If my point is straying too far from any useful or bearable input then please say so and I'll save the soapboxing for another day. The last thing I would want to do is make an emotionally very difficult time any worse than it needs to be.

Firstly OP, this is a hard time and you have my sympathy in this tough situation.

Like anything else the application of LCP should be individually assessed and applied. My father was prematurely put on the LCP without any consultation with us his family. This I had a problem with - so I challenged. If you feel OP, that you or rather your relatives next of kin has not been consulted or the needs of your relative have not been fully assessed - make sure you challenge and push for a discussion to explore the prognosis and options and agree a way forward.

All the best.

Please trust the medical staff at the hospital.

I would, but when asked fairly straightforward questions about her care they kick the responsibilty upstairs.

I have been told that I need to speak to the Doc, but he has not been seen all week. My aunt managed to get from Australia quicker than the doc could get onto the ward.

A simple platitude like 'she's getting the care that's the best for her' would have saved a lot of stressing this week.

A random stranger on a MTB forum has done a better job of explaining things (Thanks again, Hannah) than someone in a 'caring profession' in the same building.

I am quite satisfied that easing my gran to her end is the right thing to do. But if you are going to have a formal process for doing that, you might as well expedite the process.

Terry Pratchett had the right idea.

Britain sucks for all sorts of reasons, and this is very much one of them.

Not really sure end of life care is a stick to beat britain with. It sucks pretty much everywhere and we at least try to cope with it:
http://www.theguardian.com/society/2015/oct/06/uk-tops-end-of-life-care-index

As someone who runs an acute stroke unit on a day to day basis and sees dense and highly comprising strokes I'll say my piece;

I'm all for euthanasia, the current way of doing things seems unfair.

What hannah has said is the best we can offer legally.

Sometimes we unnecessarily prolong people's lives in the last days not for their benefit but for the surrounding family/friends. This is also undignified in my opinion.

Hope you grandmother finds some peace.

Op,
Do what you need for your nan.
Do not be afraid to speak up for her, and yourself. It's better to do it and make a mistake than have regrets later that you didn't.
The fact that you have concerns of reason enough to speak to them.
Decent palliative care involves making things right for the patient,[b] and their family.[/b]

@Scott tough times, our thoughts are with you and your nan. As above ask the doctors are carers whatever auestions you want.

Hannah, thanks for contributing, very much appreciated what you do for a living. I know I couldn't

I don't think this is the time / thread to discuss but my neighbiur is a lrofessor soeciLising in care / end of oife for the elderly and got a CBE this year for her work. It's a very complex area with some very difficult choices. I also have spoken at length to insurers and administrators about end of life health cover. Agai highly sensitive and subjects many are rightly unwilling to discuss in public

Scott as everyone has said it is a very tuff time. It was only a year ago I spent all day every day on the intensive care unit not knowing if my friend would make it.

And this thread sent me back there with great feelings of sadness. If you feel you are not being kept sufficiently informed, take your concerns to the people at PALS.
If only because it may make the doctor show his face.

For the sake of completeness, my gran died last Tuesday.

A doc turned up and explained that she had kidney failure and any fluids etc. would not have helped the situation.

Which explained all, and was all we wanted.

Thanks for the kind thoughts. Why is it always at Xmas?

Thanks for updating us.
Hope you managed to have some sort of Xmas.

Thanks for the update. Sad times. Take care.

Hope you're OK.
Best to all.