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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.

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.

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