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.

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.

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.

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

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!

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

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

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

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

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?

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).

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

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)

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.

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

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.

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

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.

I agree with you Morloth. Absolutely.

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.

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.

so sorry you are going through this nooka

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.

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.

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.