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to think I'd want to remain conscious if dying - not be in a Liverpool Care 'Coma"

(136 Posts)
Isabeller Sun 30-Dec-12 23:13:04

The publicity about the apparent misuses of LCP are upsetting to read about. I first heard of it a couple of years ago and thought it sounded like a good caring way of looking after someone who was dying but recent news reports give a very different picture.

How I feel now is that I would not want to be sedated - is it possible to refuse such medication in advance?

I'm not saying anyone else should feel this way of course.

Several members of my family are thinking about making Lasting Powers of Attorney and I wonder if it should go in there. I'm not ill or anything BTW.

peaceandlovebunny Sun 30-Dec-12 23:18:57

the government saved my mother's life recently by changing the rules so that the hospital could no longer lcp without family permission. she was on her way out but they had to start giving her drinks again. we'd already queried their 'care'. it took her eight weeks to recover from their lcp, and she's now in a care home.

hiddenhome Sun 30-Dec-12 23:24:27

In my experience (care home) it's a very useful tool and most of our people are in pain and agitated when dying, so do need strong analgesia and some sedation.

We find that the local hospital are too ready to write the elderly off though.

toobreathless Mon 31-Dec-12 00:12:50

Unfortunately there is a huge amount of negative publicity about the LCP at the moment. Mainly due to lack of knowledge and transparency about it. The aim of the Liverpool Care Pathway (LCP) is to identify patients who are nearing the end of their life. It supports patients and families in identifying distressing symptoms (pain, sickness, agitation) and providing medications to relieve them. It also helps support staff looking after these patients by providing a common framework, ensuring patients do not receive pointless tests/medications and are checked regularly and kept comfortable.

The only time patients are sedated is when their symptoms are so distressing that sedation is needed. Unfortunately some people can get agitated during the end stages of life (terminal agitation) & this can be very distressing for them and their families so an injection is offered. This tends to make people calmer and sleepier but wouldn't put people 'into a coma' unless a very large dose was used. Its far more likely that patients 'in a coma' on the LCP are so because of the dying process itself not the medication used.

Power of Attorneys (POA) are arguably a good idea regardless of age or health. Heaven forbid, you became very unwell & were unable to make decisions for yourself you would be treated in your 'best interests' by the medical team. Your family although consulted, would not be able to consent to or refuse treatment on your behalf. If they held a POA they could. There are 2 types, one for health and welfare and one for financial matters.

HTH

ILoveSaladReallyIDo Mon 31-Dec-12 00:18:44

I've looked after numerous people under the lcp and I must say that it bears no relation whatsoever to any of the anti LCP stuff I've read, some of it is just plain lies, the rest is missinterpretation.

Prior to the lcp, dying in hospital was a lot crueller than it is now, people died on loud busy bays (now they are given side room priority and not moved every time the bed manager wants a re-shuffle), now they can have fluids "for comfort" and are not denied sips of water because their swallow is unsafe etc

Sedation isn't routine, its given when people are dying in lots of pain or confused distress - I used to see a lot of that in the past, it was HORRIBLE! I wouldn't wish it on a dog!

BananaBubbles Mon 31-Dec-12 00:20:05

Would you honestly prefer to be in extreme pain or distress?

Utterlylostandneedtogo Mon 31-Dec-12 00:20:30

My understanding of the LCp is that it's giving more dignity to death. I see nothing wrong with that.

peaceandlovebunny Mon 31-Dec-12 00:20:32

having seen it, i can assure you it is still cruel.

ILoveSaladReallyIDo Mon 31-Dec-12 00:21:18

also, not painfully squeezing someone's arm 4 times a day to do their blood pressure just because everyone is getting their BP done at that time.. is another very good thing which the LCP has changed

Utterlylostandneedtogo Mon 31-Dec-12 00:22:54

Death is cruel in general. Dying can be extremely painful and traumatic for all concerned. Making it a little bit more bearable surely isn't a bad thing?

Pantomimedam Mon 31-Dec-12 00:26:14

toobreathless, do we know exactly what is involved in 'terminal agitation'? Are the causes, mechanisms and effects fully understood?

I understand the LCP is very helpful when used properly and in consultation with relatives and/or the patient (where possible inc. considering previously-expressed wishes).

ILoveSaladReallyIDo Mon 31-Dec-12 00:26:20

the LCP itself doesn't actually specifically withold drinks, in a lot of cases it's the opposite allows them where they would otherwise be NBM due to swallowing risk, under the LCP you can wave that give drinks and food "for comfort" in lucid moments even if SALT tests were failed

BookieMonster Mon 31-Dec-12 00:26:23

Our good friend was asked whether he wished to be sedated for his final few days when he was dying of cancer. He was in pain and very agitated and said yes. There's no way I'd want to be conscious through that.
The LCP was designed as a way of providing a uniform, caring procedure for the end of life. It's not some torture device.

There is a lot of Bollocks in the press about the Lcp as has already been eluded too. I have had too much wine to make a better argument for it's use than others here but don't believe everything you read in the daily mail...

One of the strongest arguments in favour is being made by a care of the elderly physician in her 30s, Kate Granger, who is currently terminally ill with cancer. She speaks very eloquently on what a good tool it can be to ensure a dignified and peaceful death if used well. Like anything, there will be people who misuse it but imho more people were mismanaged whilst dying before this came into use (I am a doc so not talking without experience)

apostropheuse Mon 31-Dec-12 00:41:13

It really depends on what type of death you're having OP. Sometimes the levels of pain relief needed cause you to more or less lose consciousness. As I'm not in any way medically trained I don't know if that's technically accurate. However, I was with my mother when she died and her pain relief had to be given at the level that she went to sleep so that her agitation and pain was alleviated. It was preferable to seeing her writhing about the bed to be honest. It also meant that she was peaceful and settled for the last two hours of her life and slipped away at the end.

Bubblegum78 Mon 31-Dec-12 00:51:13

LCP is an excellent tool when used correctly.

There is no reason to think you would be in a coma or sedated, this is not standard practice.

It also depends on what you are dying of.

Would you like to die in chronic indescribeable agony or would you rather drift off in a pain free stupor... I know which I prefer!

Occassionally some people survive LCP, not often though, not because of a wrong diagnosis but through some kind of "luck".

There will always be complaints, usually from patients familys who have poor understanding of their relatives illness or outright denial.

As for reading the papers about LCP rolls eyes

Isabeller Mon 31-Dec-12 00:57:23

Thank you all for very thought provoking replies. I do not know if I am being unrealistic but, for myself, I would prefer to be in more pain but be more conscious although if my pain was distressing other people it is difficult isn't it?

If I was dying it would be my last chance to experience anything or communicate at all. If I was able to communicate presumably I could consent at the time to individual doses of painkillers without consenting to be sedated.

Is it inconsiderate not to agree to allowing my death to be managed in a way that does not distress others? I really don't mean to suggest pain relief is a bad thing in general but that it isn't necessarily everyone's priority.

sundaywriter Mon 31-Dec-12 01:03:34

being conscious doesn't mean that you will be able to communicate clearly
I have only seen one person die but I imagine it's a bit like birth - every time is a bit different, and you can't predict all that accurately what your needs will be when the time comes
by all means put it in POA but I should imagine that would be a bit like a birth plan - fine in theory, but may need adjustment

Morloth Mon 31-Dec-12 01:04:10

God no, hit me with the morphine and let me slide right out.

I do all my living NOW in the moment, when the time comes I will not fight because I already had a lot of fun.

Drugs are nice.

Viviennemary Mon 31-Dec-12 01:11:02

I agree with you Morloth. Absolutely.

apostropheuse Mon 31-Dec-12 01:22:44

Isabeller It is extremely distressing to see a loved one die in agony. Have you witnessed a death?

Sedation isn't always a conscious decision, it can be a side effect of getting the right amount of pain relief to take away a person's agony.

I actually don't think you can appreciate how bad it can get unless you've witnessed it.

nooka Mon 31-Dec-12 01:24:50

My father is dying from brain cancer and just before Christmas his palliative care team delivered sufficient drugs just in case his condition deteriorated over the holidays. One of the potential effects of his tumour is seizures so it was important to have sedatives to hand. Although my father is conscious he can't reliably communicate anymore so having planned care for him was very important. The palliative care team he has are based at the local hospice and wonderful, we are all so very glad that he won't have to die in hospital but either at home or in the hospice which will be focused on making sure he has a good death. Historically dying in hospital has been a pretty grim experience for both patient and their families.

sundaywriter Mon 31-Dec-12 01:29:31

so sorry you are going through this nooka

apostropheuse Mon 31-Dec-12 01:31:35

Nooka I'm sorry to hear about your father. I'm glad to hear you have the services of the palliative care team from your local hospice. Their help can be invaluable.

We had their help when looking after my mother in the end stages. Fortunately my mother was able to die in her own bed at home because of their help - as well as the help of Marie Curie nurses. She had acute myeloid leukemia and her pain was relieved by syringe drivers delivering morphine, as well as extra shots of morphine by a doctor on the night she passed away.

I will be forever grateful for the compassion and support both my mother and our family were shown by the medical professon. The care was truly outstanding.

I hope your father has a peaceful end and that you are supported in all your needs.

Delayingtactic Mon 31-Dec-12 01:38:05

The LCP can be a wonderful tool to allowing some one to die a dignified death. I certainly haven't seen the examples the papers trot out. Yes people can be taken off it if they become better but that surely shows its a continually assessed process rather than a static diktat.

I think the issues surrounding it are largely based on communication and building a relationship with patients families so they understand it properly. Food and drink are allowed even if there is a poor swallow. I've certainly seen patients having their favourite whiskey as their preferred drink! A very good care of the elderly doctor always encouraged patients to let us know what they wanted food wise - her opinion was that if you're going to aspirate something it might as well be chocolate cake rather than the nasty thickened fluids.

I would have the LCP for myself or for any of my family. In fact my man was on it but when she showed improvement active treatment restarted. Not all patients are sedated, even when on massive doses of painkillers. Sedation is given for agitation and distress, not just for pain.

sashh Mon 31-Dec-12 01:42:02

I do not know if I am being unrealistic but, for myself, I would prefer to be in more pain but be more conscious

You have never experienced severe pain then.

Isabeller Mon 31-Dec-12 01:49:10

apostrophuese I have not witnessed someone dying in agony. I have had serious illness though and witnessed others being distressed by it.

I'm so glad to hear you have such good support from the palliative care team nooka and hope your dear father does have a good death.

sundaywriter Mon 31-Dec-12 01:51:38

when you see that it does change the way you think about it tbh

Isabeller Mon 31-Dec-12 02:06:20

sashh I have experienced severe pain, sorry if you have also.

I certainly would not for one minute wish to inflict severe pain on anyone and I do not in the least disagree with pain relief or think anyone else should have my preferences.

I do agree with the comment about birth plans needing to be revised and this being similar.

apostropheuse Mon 31-Dec-12 02:07:43

Isabeller I'm actually glad you've not witnessed it. I hope you never have to.

You say you've had serious illness, which I also have had, but thankfully I'm much better now. It doesn't always equate to the type of agonising pain I'm describing in relation to a dying person though.

To explain further - my father died five months after my mother due to a long term illness (COPD - Emphysema). Now, this illness did not in any way need the same level of pain relief as my mother's did. His breathing was certainly bad and he needed medication to relax him a bit as well as the usual stuff he was taking. With his type of illness it was unpleasant and distressing as I believe it's a bit like drowning - the gasping for breath etc. However, even with all of that, he didn't need the morphine etc that my mother did. He did, however, need to be nursed more - and in fact had to die in a small local care facility as I was simply unable to look after him at the end due to his needs. (At one point I was looking after both of them and it was incredibly stressful).

I do think you just have to have an open mind and realise that you won't know what you need/want until you are experiencing it.

My parents died at aged 62 and 65 respectively. Their deaths were due to illness. My grandmother slipped away peacefully at 86. Perhaps therein lies the key. She died a natural peaceful death with no other things going on other than her body was worn out.

Maybe that's all we can hope for.

expatinscotland Mon 31-Dec-12 02:10:01

'I do not know if I am being unrealistic but, for myself, I would prefer to be in more pain but be more conscious although if my pain was distressing other people it is difficult isn't it?

If I was dying it would be my last chance to experience anything or communicate at all. If I was able to communicate presumably I could consent at the time to individual doses of painkillers without consenting to be sedated.'

Yes, you are being very very unrealistic. Have you been around people dying from a progessive, degenerative disease like cancer? Do you really believe LCP is about euthanising people?

It's not.

Isabeller Mon 31-Dec-12 02:16:52

sundaywriter do you mean that witnessing someone else having a painful death would affect your wishes for pain relief yourself? My personal preferences are based more on my own experience of pain and pain relief rather than on other people's experiences.

My DM for example definitely prefers maximum pain relief (she is quite poorly) and I would always support her being made as comfortable as possible as I know this is her wish.

I read about the LCP as a positive approach when DPs Mum was first diagnosed with dementia and expressing a wish to stay at home until the end of her life which may well be many years away. She is still at home and I hope we manage to fulfill this wish for her, as the dementia is very advanced now it is clearly in her best interests to be as pain free as possible and we try to ensure this every day.

I really do appreciate everyone taking the trouble to comment thanks.

TurnipCake Mon 31-Dec-12 02:22:32

If I was dying, I trust the staff caring for me would use the appropriate medications as and when required, which is how I've seen the LCP used.

When I was a junior, the most disturbing death I witnessed was on a patient who was dying but the team looking after them were reluctant to treat them in a palliative way (mainly because it would skew their figures, they were surgeons). Their death still haunts me to this day.

I can't always make everyone better but I pride myself in working with teams who can keep people comfortable when the end is near. Bollocks to all the daily fail reporting.

Isabeller Mon 31-Dec-12 02:43:00

apostropheuse I do get what you're saying about different illnesses and deaths.

I might have been too literal in an unintentionally misleading way as I have been close to a lot of people when they were dying of quite a number of different things, I was not actually present at the moment of death and none was in obvious agony thankfully. (I believe my Nan had a pretty bad time with cancer at the end but as I was only 3yo I didn't see her in the very last stages).

I also really identify with the stress of trying to look after several people at the same time, it must have been so exhausting for you and if anything I have written on here is insensitive please accept my apologies.

My understanding is that LCP is not the same as euthanasia, expat, if some families feels it has been misused in that way I'm sure you'd agree that is wrong but that doesn't invalidate the whole approach. I'm sorry if I seem to be rather dim but why do you think I am being very very unrealistic (sincere question)? I really am not saying 'no painkillers under any circumstances, thanks'.

All this does demonstrate that I'm going to have difficulty writing down what I mean if I do put some thing in an LPA smile

theplodder Mon 31-Dec-12 02:57:00

The LCP is not a one way street.

My grandmother was in hospital earlier this year. She was in terrible distress and really on her last legs. We spoke to the docs and discussed the LCP. She was put on it.

Subsequently following monitoring, she later recovered enough herself to start eating and drinking again. when she asked for water , she was taken off the pathway and had another few weeks of life.

It was absolutely the right thing to do to put her on it in the state she was. The LCP allows for close monitoring (every 15 mins) of patients on it and it is made sure they are comfortable. If an improvement is seen, they can be brought out of the protocol.

The pathway is one i would want for myself and it is not a one way street but recognises when life is coming to a natural end, rather than forcing needless interventions when unnecessary.

apostropheuse Mon 31-Dec-12 03:17:35

Isabeller You've certainly not at any point come across as insensitive. Quite the opposite.

You're simply trying to determine what you want at the end of life in a reasoned thought-out manner. I personally am not sure if that's actually possible, but you are certainly entitled to think about what you want and to let your needs be known.

I think you just have to do what you think is right for you at this moment in time, all the while realising that you may need to change your mind if the situation ever arises. You seem to me to be the type of person that could do that.

Perhaps if you do make a formal statement about your wishes, you could add that at the end.

TraceyTrickster Mon 31-Dec-12 07:49:39

I wholeheartedly support the LCP as a way of making the end of life dignified and as pain free as possible.

My mother's brain was shutting down and her bodily functions failing (swallow reflex amongst them). Watching her choke on a spoonful of that yoghurty stuff was heartbreaking, and seeing her dehydrate was cruel (IV lines did not work). We (siblings) asked for as much pain relief as possible. LCP was not given automatically.

Seeing her die in a painful and drawn out way was awful- she could have survived 3 weeks longer if she had not been put on LCP at our request- but for what purpose? Pain and suffering for 3 more weeks?
I would not wish that kind of end on my worst enemy.

alistron1 Mon 31-Dec-12 08:56:24

My MIL suffered with extreme terminal agitation at the end of her life. She was terrified and it was incredibly distressing to witness. The LCP gave her and us a structured plan in order to deal with this and make her m

alistron1 Mon 31-Dec-12 08:58:42

Damn thumbs! Make her more comfortable until she slipped away. She had been placed on the pathway a few years earlier during a particularly bad episode of her condition (resp failure, too ill to be ventilated) however she turned a corner and was taken off it. Like others the reports in the DM bear no relation to what I've witnessed.

Meandmycats Mon 31-Dec-12 09:17:19

My dad died of cancer. He was in a lovely hospice at the end who did their best to keep him pain free, but when the end was imminent he was absolutely terrified and had panic attacks which were horrendous to witness. I was really pleased when they sedated him and put him to sleep. He slipped away a couple of days later without the writhing, screaming, and sobbing that had accompanied his earlier panic attacks.

Until you are in that situation you will not know what will be best for you or a loved one. I would have preferred my dad to calmly pass away after sweetly giving some wise last words but that obviously was not going to happen. He was in pain and he was scared. It was awful for him to experience and it was also horrific for his family to watch. Sedation was best for him.

PessaryPam Mon 31-Dec-12 09:27:24

Isabeller Thank you all for very thought provoking replies. I do not know if I am being unrealistic but, for myself, I would prefer to be in more pain but be more conscious although if my pain was distressing other people it is difficult isn't it?

Have you ever witnessed a person dying from something non-sudden? Please come back and post again when you have.

when you have watched someone you love die you will change your mind. when the other option to the coma type state is screaming and thrashing about in pain. not saying everyone will go through this but my mum had a terminal illness. her death was devastating for us a family and it made it so hard to see her in the level of distress she was before they got control of the medication. so no, I wouldn't prefer to be conscious neither would I want what we had to go through on my family or anyone else's

PessaryPam Mon 31-Dec-12 10:05:39

Me too Waiting. It was the worst thing ever.

3littlefrogs Mon 31-Dec-12 10:10:50

ILoveSaladReallyIDo

I wish that were true. sad

Someone I loved died in pain, starved and neglected, in a noisy, busy ward, very recently. It seems every time I pick up a newspaper I read of similar cases.

digerd Mon 31-Dec-12 10:14:16

Me too with DH 16 years ago, and still traumatising at what he went through, right to the end.

horrible isnt it pam and 3little you have my thoughts with you. My mum died mid November and im finding things really hard. Should of left this thread be really but i dont think people sometimes fully understand what it can be like to witness that. At least we came away in a sense knowing that we did everything we possibly could to stop the pain and the fear in a small way.

and you too digerd

MummytoKatie Mon 31-Dec-12 10:32:15

Before I had dd I would probably have agreed but when I had dd she was back to back and got stuck. I didn't want an epidural (as the idea of them scared me) so for a while didn't have one. I was not lucid. Had I had things I wanted to communicate with my husband I would not have been able to get them out.

After a while the midwife calmly said to me "there is no reward for being in pain. Let us help you." And I agreed to the epidural as I was beyond the point of caring about my fears of epidural. They then tried to consent me. In my head I was completely lucid. (I was able to calculate the 1 in 80 risk as a decimal.) But I couldn't get the words out to consent. It took about 30 mintes for me to say "I understand. I consent."

Once the epidural was working I was lucid. Then I could say whatever I needed but if you are in too much pain you just can't speak. You may be thinking things but they just won't come out.

I agree, when we were at the hospital and went to get a nurse to administer more pain relief as mum was getting agitated she told us that she thought it was mums way of trying to communicate with us. It was the single most painful thing anyone has ever said to me and i hated her for that. Too let her be in pain wincing and grimacing because she thought it was her way of speaking to us wasnt on to me and she was soon got her ovverulled by the palliative care nurse. I know that she was religious and told us this but i was furious that her beliefs were what she made a decision based on not us who knew our mum.

McNewPants2013 Mon 31-Dec-12 10:55:52

I would rather die without pain by any means if that was sadation then so it be.

I don't belive in the afterlife, i belive once you die you die. I wouldn't want my Children and DH and other family members seeing me in pain. I would like there last moments with me to be happy ones.

I was with my nan in the few days leading up to her death, and she looked wondeful and well. It help me grieve because i know those last days she wasn't in pain for the first time in years.

Labradorlover Mon 31-Dec-12 11:07:39

After seeing my friend die, sedation all the way for me, if I couldn't have euthanasia. Hellish to witness and from seeing others in the hospice, not that uncommon. Think terminal agitation comes from pain and the sutting down of the body with raised calcium in the blood. It is not like a profound deathbed scene from a film.

apostropheuse Mon 31-Dec-12 11:21:21

Hollywood has a lot to answer for Labradorlover

Mayisout Mon 31-Dec-12 11:23:05

I want to say that you must state your wishes to the hospital. I assumed they would sedate if DM became agitated or, as she was so old and frail, suggest she go to hospice or similar but they seemed to be making suggestions of scans and further treatment. I was upset and said in exasperation to the staff nurse something along the lines of 'OMG why do you keep messing about with her she's not going to recover from any of this, can't she just go to the hospice'. And only then did they quickly arrange a transfer to the small cottage hosp where she passed away two days later. She was kept on something to calm her there as she was v agitated for the first time in her life but, thankfully, passed away peacefully.
So you might have to state your wishes though I am in Scotland and they might have different policies there.

Anniegetyourgun Mon 31-Dec-12 11:24:21

I think what happens is that these dreadful cases are reported of elderly patients dying through neglect, sometimes kept sedated so they won't be a nuisance, and this gets conflated in the minds of reporters/the public with the LCP which can include sedation. Likely this is increased by the guilty management saying "the staff didn't sort of forget to give your mother a drink for two weeks, it's not that we were too busy or couldn't be arsed, it was all part of the... er, Liverpool Care Plan, that's right! We were doing it on purpose for her benefit. Of course." When it was nothing of the sort. Of course.

Morloth Mon 31-Dec-12 11:46:22

When they found my Dad's cancer it was already way too late to do anything about it.

He made the decision to not fight, to just enjoy the bit he had left and right at the end that 'enjoyment' entailed sedation.

I want that sort of death.

Andthentherewere5 Mon 31-Dec-12 11:47:15

My Dad died 10 years ago. He was a great big bear of a man reduced to a husk by 8 years of prostate, kidney and throat cancer. 35 years an army officer, brave, loyal and devoted and no stranger to pain. He didn't "do" emotions, just the way his generation were and the way he was brought up.
When he looked at me about a week before he died and whispered "I'm scared", there was no way I would have denied him sedation. He knew he was going but he didn't want to be aware of it IYSWIM. To see him eventually drift away, at home with us, was the final act of care and love we could do for him. And the doctor and us all knew the extra morphine he was given as well would shorten his life. Right thing to do though.

My worst nightmare is being conscious and in pain but unable to communicate. Especially after seeing my mum die. I'd much rather be sedated and be absolutely unaware.

ILoveSaladReallyIDo Mon 31-Dec-12 13:45:31

3littlefrogs that is very sad sad but an arguement FOR the LCP to be implimented properly surely?

In severe pain people aren't particularly communicative or loving in general, and don't become more profound etc when dying, often just more confused and upset. People's last words to loved ones are often "fuck off" if they are in a lot of un-managed pain! i've sat with devoted loved ones who buy into the "last words" "said on death bed" myth who have been told to fuck off trying to explain that it was the pain not the person sad

A lot of cases of missmanagement and NOT following the LCP pathway properly, are blamed on the LCP, rather than used as examples of why the LCP should be in place and followed correctly

ILoveSaladReallyIDo Mon 31-Dec-12 13:47:54

and just to reitterate, sedation is not routine, the LCP is about comfort and if someone is comfortable or coping with a small amt of pain and enjoying moments of lucidness and moments when they can enjoy a bit of food and drink then heavy sedation is not given under proper LCP care!

It also allows 24 hour visiting as LCP patients are given side room priorty, so MORE time to communicate if they are comfortable doing so

ilikefestivitea Mon 31-Dec-12 14:23:28

There is such a lot of shite written about the LCP in the press at the mo. First off, it's not a pathway to make people die, it's a best practice guidance for when people are thought to be in the last few days of life. Death is difficult to predict and as such, the care plan can be stopped if things change (I've seen people come off it, but invariably go back on a few days later).

The only thing that is "dictated" in the LCP is that patients are assessed properly and their symptoms managed in an approriate way, whether that is anxiety, pain, nausea, breathlessness, excess oral secretions etc etc.

The thing is, palliative care provision in hospice or at home has been managed in similar ways for years, it's just that it never had a name. All the stories in the current press seem to relate to hospital and seems to me to be mainly down to poor communication / understanding with families and the fact that newspapers seem to think it's ok to pedal the myth that people can live forever and that the family's side of the story is gospel ( because a hospital doesn't comment to protect confidentiality).

Noone can really say how they would react to certain circumstance, but if a loved one was dying, I would expect them to be given the best evidenced based palliative care, in the same way I woukd if they were having curative treatment.

ILoveSaladReallyIDo Mon 31-Dec-12 14:30:43

the best things about having the NAME LCP, IMO, are that you can use it to fight the bed manager if they want your sideroom for someone vomiting in A&E and you don't want to chuck someone with hours or minuites to live out onto the loud bright beeping busy bay
and if you have an oncall doc at weekends/nights they can't do the "wellll I don't really know this patient best wait till their team are on on Monday" if you say "they are suffering because of X, they need Y now!"

The press is making the name LCP a problem, but IMO its still useful to have it (even though, yes, its just an umbrella term for best palliative care practice)

colleysmill Mon 31-Dec-12 14:42:34

My experience of the LCP bears little resemblance to the medias version.

It allowed my mum who was at the end stage of ovarian cancer to pass away with some dignity. It meant she was no longer proded and poked for access in her non existent veins for iv fluids, it gave her relief from the pain she was in and she just gently drifted off with her family around her. She continued to receive nursing care (including oral care) to keep her comfortable.

The LCP is just a tool so I guess its as good as the team providing the care. Mums diagnosis was terminal which probably helped us in deciding and accepting when the time was right to use it.

I have no regrets in giving her a gentle peaceful send off.

GlitteryShitandDanglyBaubles Mon 31-Dec-12 14:57:52

This thread has made me cry! I'm sure I'm not the only one.

If I could go back in time... I'd persuade my lovely Mil not to have the last ditch attempt was never going to work at chemo that killed her so horribly. They took away her pain relief about 48 hours before she died. It was awful. If I could go back and get her home and look after her myself (ex-carer) and let her doctor give her whatever sedation or pain relief she needed and just sit with her and hold her hand and tell her how much we all love her... Desparately trying to keep people alive can feel like the right thing to do - none of us want to lose the people we love - but my Mil was in so much pain she couldn't bear to be touched and she didn't want any of us to see her like that - the last time we went to see her before she passed away she asked me to take everybody home, she hated it... Breaks my heart and she wasn't even my mum, obvs, she was dh's... I'll always think of her as my mam though.

<shuffles off to wipe tears and blow nose loudly>

christmosschops30 Mon 31-Dec-12 15:05:55

I worked in ITU.
We would have a section 1 or section 2, one was no escalation of treatment, the other was withdrawal of life saving treatment.
They would be reviewed daily by the medical team and nursing staff.

We were always taught the importance of mouthcare and eye care, pain relief and hygiene for those on a pathway, sedated or not.
I'm proud of having worked there, with excellent staff, giving families and patients the best care at the worst time

Doha Mon 31-Dec-12 15:33:43

In days prior to LCP as a District and hospital Nurse l have witnessed a few deaths where l would happily have smothered the person with a pillow to relieve their suffering--my own Dad being one of them.
The LCP allows dignity and minimal suffering when death approaches and l for one would he happily be put on the pathway when the time comes.
Unfortunately like many other issues you only here the negative viewpoint as it "makes better" reading than the success stories

GlitteryShitandDanglyBaubles Mon 31-Dec-12 15:42:52

Bloody hell Doha you have just reminded me... many ,many years ago just before ww2, a female relative of mine, while still a teenager, suffocated her mother, at home, who was dying horribly of cancer, and screaming in pain. She couldn't bear it anymore. I think people in the famiy knew, but said nothing to anyone outside the family. Poor old dear carried that with her for years, and went on to train as a mental health nurse. Bless her. Hopefully that situation wouldnt arise today as we give better care...

colleysmill Mon 31-Dec-12 16:09:12

My mum only had cancer for 4 months but about 2 weeks before she passed she commented that we wouldn't let an animal suffer through what she had.

And she was probably right. She had been through 2 major ops, renal failure and ended up with bilateral nephrostomies and numerous kidney infections in that time.

With the greatest will in the world there was nothing anyone could do. God knows they tried their hardest. Atleast the LCP gave us the opportunity to let her go in the way she wanted - pain free, with no unnecessary interference. The LCP gave us the chance to say "no more. No more suffering" Because she had suffered terribly but in the end when it really mattered she didn't.

AnyoneforTurps Mon 31-Dec-12 16:26:58

Hurrah for all those defending the LCP from the utter twaddle in the Daily Mail & Telegraph. I have seen hundreds of people die, including some in screaming agony & distress. If that is what you choose, OP, then that is of course your prerogative, but think very carefully before making any sort of advanced directive that would prevent doctors & nurses relieving your symptoms.

(NB I'm not suggesting that everyone who dies without medication is in pain or distress, some are very peaceful, but you cannot know in advance what the circumstances of your own death will be)

ChestyNutsRoastingOnAnOpenFire Mon 31-Dec-12 16:48:28

There is so much bollocks plastered around the papers about the LCP angry

It's a tool to ensure all patients uniformly get the best care in their last days.

It is used for patients already identified as dying by the whole multidisciplinary team and can be stopped or altered at any time.

It is totally patient cantered.
Patients can eat and drink as desired.
It ensures all unnecessary or distressing procedures are stopped.
They receive drugs where necessary, there is no need for people to be dying in agony and distress these days.
It also focus' on spiritual needs , preferred place of care and families needs and opinions.

I have seen care of the dying improve vastly since its introduction.
It saddens me that patients will suffer due to press incorrect information

angry

colleysmill Mon 31-Dec-12 17:00:16

The other thing I would like to add is that LCP isn't a new thing. It's 5 years since my mum died.

Isabeller Mon 31-Dec-12 18:21:30

Thank you all again your responses have been very thought provoking and moving. I am beginning to wonder if my primary concern ought to be not causing distress to family and carers.

I have just been asked to give a lift to hospital for someone going into labour this evening so may not be back to respond as I would like to to those who have had such upsetting experiences but please accept my condolences, inadequate though that sounds x

ChestyNutsRoastingOnAnOpenFire Mon 31-Dec-12 18:35:37

But why would you want to be in pain and distress OP?
What does it achieve?

gasman Mon 31-Dec-12 18:40:06

One of the most satisfying aspects of my job is to help give someone (and their family) a good death.

It sometimes takes us a profession a little time to realise that we should concentrate our efforts away from disease fighting to symptom control. For some patients, especially those with a very acute illness we need to balance both. I believe passionately that we owe it to our patients to help them die well. We don't always get it right and sometimes other factors intervene (e.g. no side rooms, or the patient who dies before the family can be there ) but believe me we try. One of the strongest memories of my medical career was having a stand up row with a bed manager about why my critically unwell patient wasn't moving out of the resuscitation room to another place as they were about to die and I wanted the family to be in an environment they were settled in with staff they had become accustomed to. The patient died 10 minutes later. Just about the time they would have been in the lift if the bed manager had got their way.

In my natural habitat (ITU) we can't often change the place but we can try to get sedation levels, family presence and an absence of distressing symptoms.

We had an acutely unwell relative recently and the 'end of life pathway' was put into action. It was brilliant. My relative was quiet, calm and settled. They recovered and it stopped but I was proud of what had been achieved. It would have been a good way to die and the nursing staff handled it brilliantly. Their ward manager should be very proud.

I keep saying this but as a society we need to start talking about death - what we want and what we expect. It is one of the certainties of life and in todays environment of modern medicine I believe that one needs to know when to stop both as a professional and as a patient. There is a tendency to offer more and more treatment as the perception is that this is what people want. I'm not convinced but until we start talking more openly and honestly about this we will never really know.

The wall street journal carried an interesting article talking about the fact that physicians tend to chose much less intervention at the end of their life than the general public - is this the result of more knowledge?

http://online.wsj.com/article/SB10001424052970203918304577243321242833962.html

My elderly relatives certainly have more informed views on end of life issues than some of their friends. Almost all of them have indicated that they do not want life at any cost and my siblings and I are prepared to advocate that on their behalf to medical staff.

merlottits Mon 31-Dec-12 18:52:32

It's so hard for those of us well versed with the LCP to read all this ignorant, nasty and biased information about it.

Dying is an ugly, messy, terrifying thing in the wrong or ignorant hands. When I started nursing in the late 80s the dying were put in side rooms and were often left in pain and agitated, their loved ones bewildered. Fortunately experts like Professor ellershaw and Cicely Saunders changed the face of care of the dying and the speciality Palliative Care was born.

The LCP is IMHO a near on perfect document. What is not perfect and what has been described in many newspapers recently is POOR CARE. Relatives not being informed and patients not being fed are NOT part of the LCP. A patient should be supported to eat and drink for as long as they are able.

Care of the dying has become an art and I have the privilege to enable and witness 'perfect' deaths. Not always, but often. With the knowledge we have now about the processes of dying, with anticipatory prescribing and confidence and experience of staff. The LCP encourages this.

I'm so sorry those of you who feel the LCP has let your loved one down. I'm sorry I don't believe you. It was the doctors/nurses who didn't use it properly.

Northernlebkuchen Mon 31-Dec-12 18:56:57

I think it is really important to think about our wishes and the analogy with birth plans is quite a helpful one because in both cases whatever you think you want now actual circumstances may change that and it's as well not to have too fixed ideas.

Northernlebkuchen Mon 31-Dec-12 19:02:35

X posted with Gasman. Just wanted to say I thought that was an excellent post and, having worked for some years in admin in a specialty which sees a lot of end of life patients, I totally agree that my views have been shaped by that. Sometimes 'doing everything you can' is the cruellest thing to do.

Kundry Mon 31-Dec-12 19:50:34

I work in palliative care and the media storm about the LCP is making me so fucking cross. It bears no relationship to what I have seen in any hospital, hospice or community setting in my whole career. I can also remember what we did before the LCP and I would never go back to that, the horror of it is the main reason I chose to work in the field as I knew we had to make it better.

Today I saw 6 patients on the LCP. All of them were dying and no medical miracle was going to change this. Neither, if anyone else had been in their situation, would they have wanted to be conscious - I cannot tell you the distress I saw in some of their faces but ward staff are now scared to give them the pain killer and sedation they need to make their last hours bearable. Food and fluids were frankly irrelevant to all of them. Neither was it anything to do with wanting to bump people off to save beds - the hospital has a bed crisis but none of my LCP patients are going to solve it as they will die when they are ready and no bed manager has ever asked me about any patient on the LCP.

It was bloody awful and I wish i could have dragged the journalists round to show them the hell they are creating.

colleysmill Mon 31-Dec-12 20:17:31

I agree it makes me cross too. It can provide dignified experience for the right patients at the right time.

TheCollieDog Mon 31-Dec-12 20:26:43

I might have been too literal in an unintentionally misleading way as I have been close to a lot of people when they were dying of quite a number of different things, I was not actually present at the moment of death and none was in obvious agony thankfully

I have, and I was glad my grandmother had sufficient morphine to stop the pain and also stop the tremors and severe jerking and spasms. Her death was old age, basically, although officially, she was suffering from multiple infarct dementia and gradual heart failure. Her heart was slowing down so that it was more & more difficult for oxygenated blood to reach her vital organs, such as the liver. This caused pain, and agitation.

Her death was before the widespread use of the LCP, but her treatment was pretty much that of the LCP. She was sedated enough to take her out of pain (and we could see this clearly because as each dose of morphine wore off, she would start crying and spasming again). She was in & out of consciousness, and the morphine was sufficient to ease her gently. She was beyond any kind of eating or drinking, and needed an oxygen mask to breathe. It would have been beyond thinkingly cruel for her to have been denied pain medication.

I've had severe nerve pain (to the extent of cold sweats, vomiting & diarrhoea) acutely for 4 days, and chronically 6 months, and the 36 hours before I got properly medicated were very very black pain, contractions and spasms leading to vomiting due to pain. To live with that while dying -- it really doesn't bear thinking about.

TheCollieDog Mon 31-Dec-12 20:30:32

BTW, thank you to those expert in end of life care: your posts are very moving.

expatinscotland Mon 31-Dec-12 22:29:05

'I keep saying this but as a society we need to start talking about death - what we want and what we expect. It is one of the certainties of life and in todays environment of modern medicine I believe that one needs to know when to stop both as a professional and as a patient. There is a tendency to offer more and more treatment as the perception is that this is what people want. I'm not convinced but until we start talking more openly and honestly about this we will never really know.'

This. You see threads on here time and again from posters whose elderly relatives want to discuss end of life and death wishes with them and the reaction is one of shock and distress. Is it really such a shock that people in their 70s and above actually consider how they would like to meet death here if at all possible? Or plan their funerals, wills, etc.?

My parents are in their 70s and many of their friends have already died. They have paid for and planned their funerals, burial plots and headstone, made living wills (legally binding in their country), wills and signed medical power of attorney for one another. Morbid? Sensible, caring and responsible, IMO.

My father is 78. As he put it, 'I could go on another 20 years, but chances are (he has heart problems and high blood pressure), I won't.'

Death is part of life. It is a certainty for everyone and it seems very silly to completely deny that.

ILoveSaladReallyIDo Mon 31-Dec-12 22:36:14

"Death is part of life"

that is exactly how I feel as someone who works with people on LCP
the comparison with birth is a very good one, birth is part of life, but it can be very traumatic and missmanaged or a "good birth".. same for death, it is a privilage helping someone have a "good death" just as it would be to assist in enabling a "good birth".

The problem is that in this country death is bad and taboo, and I agree with expat in that I find English people's reaction to death in old age unhealthy. Yes it is sad, and still a shock to the system even when it was expected, but a lot of English people's reaction to it is that it is a horrific tragedy, whenever and however it occurs. There are worse things than death when you are very elderly and infirm!

upstart68 Mon 31-Dec-12 22:52:53

I don't know. My df died of pancreatic cancer a couple of years ago. They decided to withold fluids. There were times where he was obviously thirsty. I'd been a care assistant in the past and had to ask several times for mouth sponges. Although he would have choked if given a glass of water he was desperately sucking those sponges for a good 48 hours. And nobody would have given then to him if we hadn't been there. He was semi conscious and was writhing in pain. But both the nurses on the ward the pallitative care nurse refused to give him anything but prn paracetamol. They'd given up on him. But they refused to give him morphine. It took three days for him to die. The memory will never leave me with him writhing in pain and the skin having come off his back. I've worked with the dying as a carer in the NHS - there are just too many people who slip through the net. Lots of people came up and told us they were the one to contact, they were the one to ask and how much they cared. But when it came to it, they didn't. And I'll never forget the nurses on that ward being annoyed that we were planning to spend a third night with our dying father. As I say, I've worked on wards so I know the score. But god, there are some unfeeling people out there.

Pantomimedam Mon 31-Dec-12 22:58:34

My Great-Aunt was fortunate enough to have what I would term a 'good death' on an excellent ward in the Countess of Chester hospital a couple of years ago. The nursing and medical care was faultless. We knew Great-Aunt Hilda was very likely dying (although we'd thought that before and she'd surprised us so we couldn't be sure even though she was 93). She was comfortable, free of pain, and happy to go to meet the loved ones she's lost, once she'd passed on a family secret that she wanted to share. I could see the burden dropping from her once we'd understood. I am enormously grateful to the doctors and nurses who cared for my wonderful, funny Great-Aunt - the did her proud. smile

laffaminute Mon 31-Dec-12 23:03:00

My Mum died of a brain tumour a few years ago here in nz. I presume they don't have an equivalent pathway here as she was left to die in agony, fitting and foaming at the mouth for three days. My Dad can't now remember her without thinking of those awful days.

In contrast two of my elderly relatives died in the uk having been put on the pathway. They were surrounded by their family and died quietly, without pain and with dignity.

I know which way I'd prefer to go.

Alisvolatpropiis Mon 31-Dec-12 23:06:03

I can't say that your belief in what you would choose is wrong.

I can say I would prefer to be on the care pathway if I were dying.

All the posts from the health care professionals on this thread are very moving. Thank you for sharing.

Alisvolatpropiis Mon 31-Dec-12 23:11:15

I think my DP's mum,when she died after a long battle with cancer was,if not on the LCP,then on something similar.

It was the first death I ever saw,the only death I have ever seen to date (for which I am grateful). I was horribly frightened at the time,but looking back,it was a dignified death. She wasn't in pain at the end,she wasn't conscious,she was able to have a peaceful death. I truly believe that cannot be worse than dying in agony and terror.

sallysparrow157 Mon 31-Dec-12 23:12:15

I can't say it better than Kate Granger, mentioned above. She is an elderly care doctor so deals with death and dying day to day as part of her job. She was diagnosed with terminal cancer and has written 2 books about her expereince from the other side as well as this article on the LCP http://www.guardian.co.uk/society/2012/nov/13/importance-open-end-to-life

(her books are available on kindle from amazon and the hard copies from the Yorkshire Cancer Centre website I think - all profits go to the YCC)

I work in paediatric intensive care so sadly I am sometimes involved in caring for children who are dying. When it is clear that a child is going to die regardless of what we do, or it is clear that the suffering is so great and the potential for recovery is so small that enduring that suffering is intolerable... I can never ever make that better for the child or the family. But I will do everything in my power to NOT make it worse - to minimise the pain and the fear and the discomfort and to allow the death to happen in a quiet place with loved ones close by, and in the case of people where death has been anticipated for a while, for the death to happen in the place and with the people that person and their families would choose.

The moments in my career I've been proudest of are the ones where I have made sure someone has had a calm, quiet and pain-free death.

irishyouamerrychristmas Mon 31-Dec-12 23:28:06

I haven't managed to read all of the thread - my dad died on the 7th December this year, after being placed on the LCP, and it's a bit too upsetting to read everything. What I would say about the LCP is that it stopped the regular checks, turning of my dad, blood pressure, blood tests etc that were so upsetting to him. Every time you touched his arms he screamed out, thinking that something was going to happen to him or someone was going to do something to him. He still was given fluids, still got antibiotics (attempting to treat his pneumonia), but the interference stopped. He was very agitated until the syringe driver was set up, and even then towards the end became upset and agitated even though he was in a coma by that stage (as a result of multi organ failure, not the medication). I worried (still do) that the sedation was more for us than for him, and that I was preventing him from communicating with me if I asked for more sedation for him.

All I know is that death is crap no matter how it happens, and that if he had not been on the LCP he would have still died, but it would have been worse for him and for us. I'm not sure there is such a thing as a "good" death. His ws probably the best it could be in all the circumstances, but it was fucking shit. But one thing that I will always remember is the humanity and kindness shown to him and us by the nursing staff and the palliative care team.

hellhasnofurylikeahungrywoman Mon 31-Dec-12 23:36:34

I too, work in palliative care but I work at the younger end of the spectrum. I can only hope my death is managed in the way that the deaths I see are managed if that is to be my fate. I cannot write eloquent posts to save my life but I do know that we manage death as well as we can for everyone concerned and above all, we listen to what our young people and their families want.

My mum, sister and I watched my dad die an agonising death, in hospital, following a short and shocking illness. He had an unoperable tumour surrounding his oesophagus and trachea. It had invaded the lung wall, ruptured and was oozing mucus and blood into his lungs, drowning him.
He entered hospital being able to utter the odd word but within 48 hours was so short of breath and so agitated that he was sedated. This would calm him for a few hours until his symptoms worsened. At his worst he was trying to sit up in bed, trying to climb out of it, lashing out, wanting to open a window as he could not breathe. I will never forget his wide-eyed look of panic on his face.
In dad's case, sedation was a god-send. It calmed him. By that point he was so far 'gone' that any meaningful conversations were not possible. All there was was panic, fear and agony for him and heartbreak for us. So it was kindest for all concerned when the morphine was increased. It calmed him and allowed him to breathe. He was then calm for the final 24 hours it took for him to pass away.

It was truly the worst few days of my life but I don't think not sedating him would have been preferable. In fact, I wish they had sedated him sooner, before he knew just how terminal his situation was. (When not a few days before he had been leaving for his radio therapy appointment and been laughing with mum about the stupid feeding tube in his nose....)
Because the incomprehension and fear and sadness that it was all coming to an end was so hard to witness sad

I really want to thank everyone who has contributed to this thread and shared their experiences. I was (am still?) strongly against euthenasia (I work with disabled people who are fully aware that their lives are often seen as less valuable) but this issue really needs to be addressed.

I'm spending my new year's eve babysitting while poor dd tends to her dad in a hospice. I reckon he's got a couple of days left if that. He's 46. He still has awful moments of distress and pain but he's more comfortable than he was at home. He still wishes he could die now rather than wait it out. He said if there was a pill he'd have done it weeks ago.

One thing I've realised through all this, is that despite all the palliative care that's out there, if I was told the chemo and radiotherapy hadn't done the trick I'd top myself while I still could. I can't bare that dd is going through this.

omama Tue 01-Jan-13 01:08:08

Op i think unless u have experienced seeing someone die you cannot possibly make that kind of decision.(i.e. you would rather be conscious than sedated).
The day the stories broke about lcp was the very same day the drs put my terminally ill dad on it. I for one was thoroughly relieved the drs sedated him (at our request) as he was convinced we all had cockroaches on our faces & that we were all going to be murdered. He was incredibly distressed and in a lot of pain, even with syringe drivers delivering continuous morphine. Is that kind of distress something you would prefer to go through rather than be sedated? Or how you want your final hours to be remembered by your family? I think not. Because of the lcp & the kind & caring treatment of the nursing staff, dads final hours were peaceful & dignified.

ChestyNutsRoastingOnAnOpenFire Tue 01-Jan-13 01:14:49

behind I am really sorry you had to see your DF suffer like that. sad

I came across a lady today who remembered I was part of the team who supported her during her husbands final days and death 9 years ago.. She had comforting memories of that and that is when I truly feel I have done my job and am doing something worthwhile.
Excellent Care of the dying is so important for myself and colleagues as it is the final thing you are able to do for your patient and families will always remember their experience.

I so hate the media representation of LCP and care of the dying angrysad

apostropheuse Tue 01-Jan-13 01:17:25

When my mum died her pain was so great on the last evening that the syringe driver wasn't enough (It had been increased daily for the last couple of weeks at that point).

I was looking after her at home and so I phoned the emergency doctor, telling them that she was a "priority patient", which I'd been told to do by the GPs who visited almost daily. When the doctor saw my mother he said the only way to help her would be for her to have an injection of morphine, directly on top of the medication being administered through the syringe driver. At this point he warned me that it could bring her death closer, but that that wasn't his intention. It's just that that can happen. I had to make a choice on my mother's behalf as she was semi-conscious but still writhing around in agony. There was no choice really. I agreed that he do it. My mother continued to be agitated and writhing around for another while, then she finally settled. She was finally peaceful and I sat with her for her last two gentle, peaceful hours. The actual point/time of her death was good.

I had to do that for my mother. The doctor had to do it. It would have been inhumane not to. It was in no way euthanasia, as the intention wasn't for her to die - her death being brought forward a few hours was simply a side-effect.

We kept morphine at home in a locked cabinet for her use in the syringe driver. The doctors signed the sheet for it. I can't remember, but I think he asked me to counter-sign the sheet. It was all very open and I had complete faith in him.

We have to do what we can to help the transition from life to death to be as peaceful and calm as it can be.

I'd like to raise a glass to Chesty and all the others who have this enormously difficult job. Thanks for being there, I couldn't do it wine x

ChestyNutsRoastingOnAnOpenFire Tue 01-Jan-13 01:21:04

blush

Alisvolatpropiis Tue 01-Jan-13 01:21:54

I am with you in raising a glass tall, to all the everyday heros of professional health care wine wine wine

We appreciate you all and all that you jobs ask of you.

apostropheuse Tue 01-Jan-13 01:23:16

Tallwives I agree with you wholeheartedly.

For the last two weeks of her life we had a Marie Curie nurse at home to stay overnight - and let me have a sleep when I nursed my mother.One of them had just came on duty (ten pm) when my mother entered her very last stage. I had gone off to go and have a shower and she called me to come back straight away. She was able to see that my mother was on the verge of death. She guided me and told me when my mum had passed away.

I will be forever grateful to her.

usualsuspect3 Tue 01-Jan-13 01:26:30

I watched my niece die, I'm forever thankful to the palliative care team that made her comfortable and pain free.

usualsuspect3 Tue 01-Jan-13 01:31:31

I'm crying now, I wish I had never read this bloody thread.

ChestyNutsRoastingOnAnOpenFire Tue 01-Jan-13 01:46:59

<<shares tissues with usual>>

Alisvolatpropiis Tue 01-Jan-13 01:49:21

<<shares tissues with chesty and usual>>

I've found this thread to be very moving too.

oldpeculiar Tue 01-Jan-13 01:55:31

OP- you are either barking mad,or don't know what you are talking about.I suspect when the time comes for you, or a loved one, you might think differently.

apostropheuse Tue 01-Jan-13 01:57:08

I've been very moved too. I've also found it very therapeutic IYSWIM.

There are some good people in the world. smile

x2boys Tue 01-Jan-13 08:32:11

up untill very recently i was a staff nurse on a ward which cared for people with all kinds of dementia [ have recently changed jobs] i have nursed several people on the liverpool care pathway and in my experience it made for much more pain free peaceful deaths, the families of our patients were always fully aware of what was happening and gave consent our patents were only ever placed on the pathway within hours of there death if any improvement was made the LCP would immediatley be reviwed ignore the bollocks in the papers!

TandB Tue 01-Jan-13 08:46:54

I think that unless you have actualy witnessed someone dying of a terminal illness, it is very difficult to imagine. The pain and distress at the ending of a life is something very different to anything else. It's not peaceful or inspiring. It's a downward spiral with an inevitable end result and all you want is for it to be over with.

I saw my mother and grandparents die from cancer. I wish the LCP had been available then. As it was, a very compassionate medical team agreed to a course of action for my mother which probably wasn't entirely legal, but was certainly the right thig, and the thing that everyone wanted for her. Unfortuntely that didn't happen with my grandparents but they were both unconscious right at the end which was a relief.

expatinscotland Tue 01-Jan-13 09:13:51

I agree, kung. You put it very well. I saw one young man die very traumatically about 14 years ago in a rock climbing accident, but other than that, only people I knew who died in other accidents outside my presence and then my daughter, who died in ICU of pneumonia following treatment for cancer.

Her death was handled as well as could be. Drugs and treatment were not witheld until meeting with my child's consultant, the consultant intensivist she called in following my request and us, and us her parents.

But her death was a foregone conclusion. Hours after my child developed a massive pneumothorax, her room in ICU became a different place. My husband, her father, and I went outside to discuss. Thankfully, there was time for this.

The consultant said, 'Tonight is about her and you all.' Everyone we wanted in the room were there, a couple who'd lost their only son to DIPG several months before, a woman who'd lost her only child to stillbirth, my parents, the consultant professor who lives for the children she treats. The consultant asked, 'Do you want me to call X?' (her consultant's name). Absolutely! It was an honour. My child was treated until the minute before that vent was pulled.

I know from others, LCP is not a means to snuff out people who might recover fully.

You get press, people say, 'Oh, Nana lived,' but it's not a complete recovery. We're not talking about people who are completely cured and live for decades longer.

It pains me, to read such bad press.

I feel it does a grave disservice, to so many who work so hard for others, who want them to die with whatever dignity there can be, free of pain and agitation.

And though there may be some bad apples, I think most providing care are sound people, doing a job most wouldn't want, for many can't abide even the thought of death, what a shame, because it is a certainty for all.

And just this evening I spoke with my mother, age 72, at length about how she wishes her death and the little details after her death to be handled, the particular player she wants, the particulars of food and drink at her memorial service. I am so grateful, to hear her wishes and hopefully be around to abide them, for I hope she dies before me.

Just yesterday, she booked a hall for a woman's mother who died, age 91, and listened to the lady tell her all about her mother, and how much this lunch means to her, but how she is not sad, for her mother lead a very good life and died suddenly and quickly, of heart attack in her nap and then heart failure. And it did not for once trouble me, to hear my mother say she hopes she goes the same way.

I wish it for her and my father both, for I love them and do not wish them any suffering. And I know, being both in their 70s, that it is likelier than not they will die sooner rather than later.

Death isn't cruel. It just is. It's a certainty.

And IME, there is such a thing as a better death or a 'gooder' death than others.

I feel the LCP is there to ensure some may have this.

ohmeohmy Tue 01-Jan-13 09:23:13

This bad press from the DM looks to me like it is designed to assist the Govt to undermine the NHS, to portray it's staff as uncaring evil doers ripe for being sorted out by private companies.

expatinscotland Tue 01-Jan-13 09:26:26

Does anyone think their mother or father wishes to outlive his or her child? Because I can't think of a single parent who'd wish such a thing.

So talk. Talk about the part of life that is death. And listen. Even if your parents are in their 40s or 50s.

TicTacTopToe Tue 01-Jan-13 09:41:34

YYY to this:
"The pain and distress at the ending of a life is something very different to anything else. It's not peaceful or inspiring. It's a downward spiral with an inevitable end result and all you want is for it to be over with.
I saw my mother and grandparents die from cancer. I wish the LCP had been available then"

Hollywood would have us believe you are likely to be in a bed, semi concious listening to and saying meaningful things to your loved ones and then your eyes close and you just slip away.
This isn't my experience of someone dying of cancer at all. I think the LCP is used appropriately and with care far more times than it is not.

ChestyNutsRoastingOnAnOpenFire Tue 01-Jan-13 09:48:07

expat you've set me off again.

<<wipes eyes>>

RustyBear Tue 01-Jan-13 10:04:30

My Dad, who was 102, died in November, of a chest infection which turned to pneumonia. When it became clear that the ABs he was on were having no effect, the doctor talked us through the meaning of the LCP - he was very obviously picking his words carefully, worried that we might have got a negative impression from the Press. In fact, though I have talked to friends about his death, the only person I have actually told that he was on the LCP was an ex-nurse who understood what was actually involved, because for most people, the only information they have about up it is from the media and I was afraid that they might think we had 'given up' on my Dad.

For Dad, it was absolutely the right thing, it meant an end to the frequent blood tests which were difficult and upsetting, it meant we were able to stay with him as long as we wanted. The staff were so kind, they did everything they could to make Dad comfortable, and to ease things for my sister and me as well.

Delalakis Tue 01-Jan-13 10:14:07

I am absolutely horrified by the campaign being run by the Mail. It has had the direct result that many, many people have died slowly and in agony because their relatives are spooked by any mention of the LCP. I know it's a pretty despicable paper anyway, but really this brings it down into the depths.

lilac26 Tue 01-Jan-13 10:17:10

I am a nurse, I work night shifts in the community. About 70% of the care I deliver during the night is end of life care.

I just wanted to thank you all for sharing your thoughts on here, health professionals and families, patients and potential patients.

Every time another LCP story comes out I have a wobble and wonder if the bad press is true and that I am taking part in something akin to murder or illegal euthanasia having been brainwashed. After repeated reflection though, I still believe that the LCP approach is the correct way. In my setting it simply means that if a patient has unpleasant or distressing symptoms I have access to medication to alleviate them. And that I don't have to carry out things with patients which are likely to increase suffering in the longer term or cause distress at the time it is done.

ilikefestivitea Tue 01-Jan-13 10:32:13

Slightly off topic, but does anyone know if the press complaints commision do any good? Am rarely incensed enough about anything to put pen to paper, but I have thought about complaining about the daily mail hate campaign about this - wondered if it would be actually useful or just make me feel better for the rant smile.

Three times I have commented on the DM stories asking them to publish the words in the LCP that states what they claim it does - no great surprise that none of my comments have been published.

BasicallySFB Tue 01-Jan-13 10:33:05

I've seen both sides, pre-LCP as a Health care Professional. Hideous, undignified deaths.

I've also lost both my PIL in the past 12 months, to cancer. Agonising, agitated deaths - made easier and more dignified by the LCP. It was certainly not implemented to speed up their deaths (and my God we wished it to be hastened once they were end stage, as did they).

I was with both PIL at the end. FIL on a hospice, MIL at home. The LCP allowed nurses to give extra doses of medication to dry up secretions, pain relief (end stage cancer pain is Like no pain on earth) and, for FIL, medication to reduce his hallucinations and agitation from the 6 tumors he had in his brain. The nurses in the hospice were not quick to administer the extra meds, but did so when needed.

For MiL the district nurses could administer extra meds without waiting for a busy on call doctor to come out at 3am. Invaluable.

The LCP is the best thing to come put of palliative medicine in years. I am certain that both PiL would have suffered immensely were it not in place - and as they died in my arms, their suffering was great enough.

The trauma for us watching them was also immense. But 100% secondary to their pain and suffering.

Sorry if this makes no sense - still very raw.

TheCollieDog Tue 01-Jan-13 11:26:58

This bad press from the DM looks to me like it is designed to assist the Govt to undermine the NHS, to portray its staff as uncaring evil doers ripe for being sorted out by private companies

Agreed. I don't normally believe in conspiracy theories, but I really think there's a campaign (maybe organised, maybe just improvised) to dismantle the NHS. A jewel of our society.

But then I can't really take the Daily Mail seriously, nor the opinions of anyone who thinks that it's an actual newspaper. Awful that it seems to be a main source of information to so many people < folds Guardian smugly >

Pantomimedam Tue 01-Jan-13 11:33:28

It is worth complaining to the PCC - it's far from perfect (and Paul Dacre is chair of the Editor's Code of Practice Committee...) but complaints do have to be responded to.

CJMommy Tue 01-Jan-13 12:40:26

Someone once wrote,

'no man can come to terms with his God whilst every moment is taken up with pain and vomiting...'

The LCP and palliative care is not about sedation, it is about excellent and essential symptom management, of all symptoms, including psychological ones. I too have seen terrible deaths when it was not used (and before it was developed). I hope it is still in use if I or my loved ones need it.

This bad press from the DM looks to me like it is designed to assist the Govt to undermine the NHS, to portray its staff as uncaring evil doers ripe for being sorted out by private companies

You may well have a point there. I'm horrified by the ridiculous campaign being waged against the LCP, google it and the first thing you'll find is a sponsored link to a group of lawyers.

When my DM was dying, she a staunch RC, said that her pain was so unbearable that whilst she did not believe in euthanasia she would do it, if it were possible.
Her death was peaceful through the liberal use of analgesia and sedation and wonderful nursing care.

Those that spout drivel about the LCP really ought to find out more about what they are talking about.

RIP Mum x

JakeBullet Tue 01-Jan-13 19:28:29

My much lloved Auntie went onto the LCP when she was dying of cancer two years ago. It wasn't discussed with her because by that point she was not really conscious. It WAS discussed with us as her family.

They did not sedate her...she had her usual medication.
She had food AS SHE WANTED which by this point was half a Calipo ice lollie twice a day.
They simply did not apply loads of extra invasive treatment which would have added to her distress.
She died peacefully with her family around her.

RIP Auntie M

OP I am on a phone so it's hard to read through all the responses but please don't let the DM scare you. The LCP is about ensuring a peaceful and pain free death as far as is possible. It's not about more and more sedation until the person dies (although pain relief might also cause sedation) .
The DM is being very very irresponsible in their publication if such inflammatory rubbish.

3littlefrogs Wed 02-Jan-13 17:56:19

The problem is when someone who is not actually terminally ill, is starved and neglected for weeks in hospital, then, hours before death, is shoved into a dirty side room, still starved and neglected, but it is written in their notes that they have "now been placed on the LCP".

I have personally witnessed exactly this, and I believe this does happen not infrequently, this is where the scare stories come from.

Properly and appropriately implemented, by qualified and caring staff, I agree that the LCP is a good thing.

egdeh Wed 02-Jan-13 18:53:39

My father has terminal prostate cancer and I have read this thread in tears thinking of what he (and my mother) will have to face in the next few months. To know that the LCP exists and may reduce his suffering gives me some comfort. I know he will die but I hate to think of him in fear and pain and my mother witnessing it.
Thank you all for sharing your experiences.

I think 3littlefrogs has a good point.

People need to see the difference between the LCP as a procedure that does immense good for people at the end of their lives, and it's implementation (or not) by people who for whatever reason are not following it properly (or worse, simply using it as an excuse for neglect).

Because it is clear that in some areas, there's poor communication and downright neglect and sadly this is getting mixed up with the LCP.

My aunt died last year following a stroke. My cousin hasn't specifically said, but I'm sure she was on the LCP for the last few days. Cousin was quite clear she'd discussed things with the doctors, and my aunt died peacefully.

A few years ago my mum had an operation, which led to an untreated hospital acquired infection that nearly killed her. She was actually discharged with it because they were so convinced her diarrheoa was due to her IBS that they didn't bother to test to see if anything else could be causing it. I saw her in hospital and the staff had an attitude of couldn't care less. She was on the verge of multiple organ failure when re-admitted that she only just pulled through by the skin of her teeth. she's fine now.

It's always going to come down to the HCP and their attitudes. Luckily, the vast majority I have met have been great.

needasilverlining Wed 02-Jan-13 20:23:57

I have never admitted this to anyone else, but the thought of dying terrifies me so much that i routinely have panics about it in the small hours. Can't imagine discussing this with parents and potentially doing same to them, or DH. Hell yes I'd want to be sedated.

I have no faith, no comforting thoughts to hang on to. Those of you in same boat, any strategies that you use?

JakeBullet Wed 02-Jan-13 20:35:34

I used to do this as well need and you are not alone.

I don't think about it very often these days and put the times I did down to anxiety about other issues in my life. They are I trust e thoughts and its finding a way of blocking them that can be hard.
Not much help I know but don't want you to feel you are alone out there.

My auntie who died two years ago said to me once that in the past she had been very ill and reached a point where she simply did not care if she died (she actually recovered at that point) and told me that with her cancer she was approaching it along the same lines...ie when it happened she would not know or care.

JakeBullet Wed 02-Jan-13 20:36:07

"Intrusive thoughts" can't type on an iPad.

needasilverlining Wed 02-Jan-13 21:33:30

Jake, you're right that thoughts are a lot worse when depression/anxiety recurring, and the idea that you change as you age is one I haven't really factored in. Thank you.

And to anyone who has experienced any of the things I've read on this thread; I am heartfelt sorry if it has sounded like self-indulgent twattery.

needsa, it's not self-indulgent twattery - death is the last taboo - we need to discuss it more.

DD's dad died last night. She was holding his hand, he was peaceful. No more pain, no more discomfort, some level of consciousness maybe, hopefully, to hear her last words to him.The staff in the hospice were amazing. When it's my time, if I can't go quickly, I'd like to go like that.

apostropheuse Thu 03-Jan-13 19:24:51

You're not being self-indulgent at all needasilverlining. Lots of people have a fear of death. You cannot help how you feel.

I have strong faith and I still have wobbles - what if?

Even if you have no faith, though, at the end of the day if there is nothing after, as some people think, then you won't know anything about it anyway.

JakeBullet Thu 03-Jan-13 19:28:21

If its any comfort silverlining one of my friends is a Catholic priest and even he admits to wobbles about it all.....usually when he has partaken of too much red wine wink.

He is also very entertaining at those times on his thoughts about the local Bishop who he hates grin.

Isabeller Fri 04-Jan-13 21:29:26

I am very grateful and moved by everyone's willingness to talk about death and dying.

All the responses have helped me to think far beyond the questions that prompted me to start the thread and there has been something personally profound about it all happening during a time I have been caring for someone who is very frail and being part of the support team around the birth of her first great granddaughter on New Year's Day.

Isabella, I'm sure I'm not the only one who was glad you brought it up. I hope all the family are doing well.

Isabeller Thu 07-Feb-13 10:52:06

Thank you tall, the person I care for enjoyed a visit from 3 generations last weekend including 3 babies. Very moving. thanks

That's lovely smile

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