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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.

tallwivglasses Thu 07-Feb-13 10:58:04

That's lovely smile

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

tallwivglasses Sun 06-Jan-13 01:19:52

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 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.

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.

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.

tallwivglasses Thu 03-Jan-13 00:55:54

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.

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.

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

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

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 when it happened she would not know or care.

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?

FryOneFatManic Wed 02-Jan-13 19:50:46

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.

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.

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.

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.

SauvignonBlanche Tue 01-Jan-13 13:07:21

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

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.

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.

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 >

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.

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.

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.

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.

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.

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

expat you've set me off again.

<<wipes eyes>>

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