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

[Isabeller]

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.

[Kundry]

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]

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

[TheCollieDog]

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]

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

[expatinscotland]

'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]

"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]

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]

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.

[laffaminute]

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]

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]

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]

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 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.

[hellhasnofurylikeahungrywoman]

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.

[BehindLockNumberNine]

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

[tallwivglasses]

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]

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]

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

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

[apostropheuse]

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.

[tallwivglasses]

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 x

[ChestyNutsRoastingOnAnOpenFire]

[Alisvolatpropiis]

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

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

[apostropheuse]

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.