to think I'd want to remain conscious if dying - not be in a Liverpool Care 'Coma"(136 Posts)
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.
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.
apostrophuese I have not witnessed someone dying in agony. I have had serious illness though and witnessed others being distressed by it.
I'm so glad to hear you have such good support from the palliative care team nooka and hope your dear father does have a good death.
when you see that it does change the way you think about it tbh
sashh I have experienced severe pain, sorry if you have also.
I certainly would not for one minute wish to inflict severe pain on anyone and I do not in the least disagree with pain relief or think anyone else should have my preferences.
I do agree with the comment about birth plans needing to be revised and this being similar.
Isabeller I'm actually glad you've not witnessed it. I hope you never have to.
You say you've had serious illness, which I also have had, but thankfully I'm much better now. It doesn't always equate to the type of agonising pain I'm describing in relation to a dying person though.
To explain further - my father died five months after my mother due to a long term illness (COPD - Emphysema). Now, this illness did not in any way need the same level of pain relief as my mother's did. His breathing was certainly bad and he needed medication to relax him a bit as well as the usual stuff he was taking. With his type of illness it was unpleasant and distressing as I believe it's a bit like drowning - the gasping for breath etc. However, even with all of that, he didn't need the morphine etc that my mother did. He did, however, need to be nursed more - and in fact had to die in a small local care facility as I was simply unable to look after him at the end due to his needs. (At one point I was looking after both of them and it was incredibly stressful).
I do think you just have to have an open mind and realise that you won't know what you need/want until you are experiencing it.
My parents died at aged 62 and 65 respectively. Their deaths were due to illness. My grandmother slipped away peacefully at 86. Perhaps therein lies the key. She died a natural peaceful death with no other things going on other than her body was worn out.
Maybe that's all we can hope for.
'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.'
Yes, you are being very very unrealistic. Have you been around people dying from a progessive, degenerative disease like cancer? Do you really believe LCP is about euthanising people?
sundaywriter do you mean that witnessing someone else having a painful death would affect your wishes for pain relief yourself? My personal preferences are based more on my own experience of pain and pain relief rather than on other people's experiences.
My DM for example definitely prefers maximum pain relief (she is quite poorly) and I would always support her being made as comfortable as possible as I know this is her wish.
I read about the LCP as a positive approach when DPs Mum was first diagnosed with dementia and expressing a wish to stay at home until the end of her life which may well be many years away. She is still at home and I hope we manage to fulfill this wish for her, as the dementia is very advanced now it is clearly in her best interests to be as pain free as possible and we try to ensure this every day.
I really do appreciate everyone taking the trouble to comment .
If I was dying, I trust the staff caring for me would use the appropriate medications as and when required, which is how I've seen the LCP used.
When I was a junior, the most disturbing death I witnessed was on a patient who was dying but the team looking after them were reluctant to treat them in a palliative way (mainly because it would skew their figures, they were surgeons). Their death still haunts me to this day.
I can't always make everyone better but I pride myself in working with teams who can keep people comfortable when the end is near. Bollocks to all the daily fail reporting.
apostropheuse I do get what you're saying about different illnesses and deaths.
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 believe my Nan had a pretty bad time with cancer at the end but as I was only 3yo I didn't see her in the very last stages).
I also really identify with the stress of trying to look after several people at the same time, it must have been so exhausting for you and if anything I have written on here is insensitive please accept my apologies.
My understanding is that LCP is not the same as euthanasia, expat, if some families feels it has been misused in that way I'm sure you'd agree that is wrong but that doesn't invalidate the whole approach. I'm sorry if I seem to be rather dim but why do you think I am being very very unrealistic (sincere question)? I really am not saying 'no painkillers under any circumstances, thanks'.
All this does demonstrate that I'm going to have difficulty writing down what I mean if I do put some thing in an LPA
The LCP is not a one way street.
My grandmother was in hospital earlier this year. She was in terrible distress and really on her last legs. We spoke to the docs and discussed the LCP. She was put on it.
Subsequently following monitoring, she later recovered enough herself to start eating and drinking again. when she asked for water , she was taken off the pathway and had another few weeks of life.
It was absolutely the right thing to do to put her on it in the state she was. The LCP allows for close monitoring (every 15 mins) of patients on it and it is made sure they are comfortable. If an improvement is seen, they can be brought out of the protocol.
The pathway is one i would want for myself and it is not a one way street but recognises when life is coming to a natural end, rather than forcing needless interventions when unnecessary.
Isabeller You've certainly not at any point come across as insensitive. Quite the opposite.
You're simply trying to determine what you want at the end of life in a reasoned thought-out manner. I personally am not sure if that's actually possible, but you are certainly entitled to think about what you want and to let your needs be known.
I think you just have to do what you think is right for you at this moment in time, all the while realising that you may need to change your mind if the situation ever arises. You seem to me to be the type of person that could do that.
Perhaps if you do make a formal statement about your wishes, you could add that at the end.
I wholeheartedly support the LCP as a way of making the end of life dignified and as pain free as possible.
My mother's brain was shutting down and her bodily functions failing (swallow reflex amongst them). Watching her choke on a spoonful of that yoghurty stuff was heartbreaking, and seeing her dehydrate was cruel (IV lines did not work). We (siblings) asked for as much pain relief as possible. LCP was not given automatically.
Seeing her die in a painful and drawn out way was awful- she could have survived 3 weeks longer if she had not been put on LCP at our request- but for what purpose? Pain and suffering for 3 more weeks?
I would not wish that kind of end on my worst enemy.
My MIL suffered with extreme terminal agitation at the end of her life. She was terrified and it was incredibly distressing to witness. The LCP gave her and us a structured plan in order to deal with this and make her m
Damn thumbs! Make her more comfortable until she slipped away. She had been placed on the pathway a few years earlier during a particularly bad episode of her condition (resp failure, too ill to be ventilated) however she turned a corner and was taken off it. Like others the reports in the DM bear no relation to what I've witnessed.
My dad died of cancer. He was in a lovely hospice at the end who did their best to keep him pain free, but when the end was imminent he was absolutely terrified and had panic attacks which were horrendous to witness. I was really pleased when they sedated him and put him to sleep. He slipped away a couple of days later without the writhing, screaming, and sobbing that had accompanied his earlier panic attacks.
Until you are in that situation you will not know what will be best for you or a loved one. I would have preferred my dad to calmly pass away after sweetly giving some wise last words but that obviously was not going to happen. He was in pain and he was scared. It was awful for him to experience and it was also horrific for his family to watch. Sedation was best for him.
Isabeller 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?
Have you ever witnessed a person dying from something non-sudden? Please come back and post again when you have.
when you have watched someone you love die you will change your mind. when the other option to the coma type state is screaming and thrashing about in pain. not saying everyone will go through this but my mum had a terminal illness. her death was devastating for us a family and it made it so hard to see her in the level of distress she was before they got control of the medication. so no, I wouldn't prefer to be conscious neither would I want what we had to go through on my family or anyone else's
Me too Waiting. It was the worst thing ever.
I wish that were true.
Someone I loved died in pain, starved and neglected, in a noisy, busy ward, very recently. It seems every time I pick up a newspaper I read of similar cases.
Me too with DH 16 years ago, and still traumatising at what he went through, right to the end.
horrible isnt it pam and 3little you have my thoughts with you. My mum died mid November and im finding things really hard. Should of left this thread be really but i dont think people sometimes fully understand what it can be like to witness that. At least we came away in a sense knowing that we did everything we possibly could to stop the pain and the fear in a small way.
and you too digerd
Before I had dd I would probably have agreed but when I had dd she was back to back and got stuck. I didn't want an epidural (as the idea of them scared me) so for a while didn't have one. I was not lucid. Had I had things I wanted to communicate with my husband I would not have been able to get them out.
After a while the midwife calmly said to me "there is no reward for being in pain. Let us help you." And I agreed to the epidural as I was beyond the point of caring about my fears of epidural. They then tried to consent me. In my head I was completely lucid. (I was able to calculate the 1 in 80 risk as a decimal.) But I couldn't get the words out to consent. It took about 30 mintes for me to say "I understand. I consent."
Once the epidural was working I was lucid. Then I could say whatever I needed but if you are in too much pain you just can't speak. You may be thinking things but they just won't come out.
I agree, when we were at the hospital and went to get a nurse to administer more pain relief as mum was getting agitated she told us that she thought it was mums way of trying to communicate with us. It was the single most painful thing anyone has ever said to me and i hated her for that. Too let her be in pain wincing and grimacing because she thought it was her way of speaking to us wasnt on to me and she was soon got her ovverulled by the palliative care nurse. I know that she was religious and told us this but i was furious that her beliefs were what she made a decision based on not us who knew our mum.
I would rather die without pain by any means if that was sadation then so it be.
I don't belive in the afterlife, i belive once you die you die. I wouldn't want my Children and DH and other family members seeing me in pain. I would like there last moments with me to be happy ones.
I was with my nan in the few days leading up to her death, and she looked wondeful and well. It help me grieve because i know those last days she wasn't in pain for the first time in years.
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