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.

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.

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