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Original poster

pathway to dying - can anyone help?

31 replies

1legmummy · 22/02/2010 00:34

I know it is late, I cannot sleep.

My Ucle was put on this after a stroke on Friday which was 9 days ago. We were told he would not last past Sunday.

All food, drink and drugs were stopped. We were only told about the pathway this week.

The Doctor realised yesterday when we showed concern about him not having any drink that the nil by mouth had been left up in error.

He is now on the morphine 24 hour thing and is comatosed

Is this normal? should they be talking t us? should he be fed?

OP posts:
LovelyDear · 22/02/2010 00:40

i don't know anything about this, but I didn't want you to go unanswered. can you ask the hospital for more information?

Original poster
1legmummy · 22/02/2010 00:44

We have and they say once on the pathway he cant come off, I asked for more info thats when they realised he could have had some drink when he was able.

I am just so worried, he is lying there starving to death not dying of the cancer but lack of food and drink

It just does not seem right - thanks for answering I know its late, I am trying to stop myself driving to the hospital

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thumbwitch · 22/02/2010 00:46

It sounds as though your uncle wasn't expected to pull through after the stroke, that the damage was too much for him to recover. So they will just be managing his last days so that he is in as little pain as possible.
They don't tend to talk openly about it, IME. When my Mum was in intensive care with terminal cancer, and she was on a ventilator etc., she removed her own feeding tube to speed up the dying process. The docs told us that she would likely die the following day and they kept topping up her morphine to keep her free from pain. So we all sat with her, all day and all through the night - and then, as she wasn't "progressing", they gave her a rather large morphine bolus which "progressed" her fairly quickly. We know what they did, they didn't tell us they were doing it, we accepted it was necessary in the circs.

HTH - sorry to hear about your sadness.

Original poster
1legmummy · 22/02/2010 00:49

Thankyou, we accepted 9 days ago that he would slip away, but he is just the same.
Heavy breathing, one eye shut, never blinking and his mouth has an awful coating like dry skin peeling.

It just seems undignified in the middle of a ward and inhumane

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LovelyDear · 22/02/2010 00:50

I've been looking at the Macmillan website - you may find it reassuring - if you want to have look it's here. My mum died of cancer, and kind of gradually went into a state of perpetual sleep. She really didn't want to eat or drink for the last two days or so that she could have done. the website suggests lip balm or ice chips might be nice.

thumbwitch · 22/02/2010 00:55

I don't think it is any less humane than allowing someone to suffer on and on, if those are the only 2 choices .
However, I agree that some liquid would probably be nicer for him - they can swab the mouth with wet swabs or use ice chips as LovelyDear said. They can't give him liquid because it could cause choking. Is he on a drip at all? A saline drip? that will be keeping him hydrated if he is.

Original poster
1legmummy · 22/02/2010 00:58

thankyou, I was just reading that too.

Dont know why but just feel like I should go to him.

Kind of weird as he is Uncle through marriage.

Just feel like we have let him down letting him suffer for so long on something that is supposed to help him to die without suffering

OP posts:
Original poster
1legmummy · 22/02/2010 00:59

no drip just the morphine thing.

Thankyou your comments are helping

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thumbwitch · 22/02/2010 01:09

can you ring the ward and ask how he is? it might make you feel a bit better, it might not. Are you particularly close to him? it is hard to know that someone you care about is taking longer to die than seems comfortable, iyswim - why hang on when all you have is pain and suffering? I know that at about 4am on Mum's last night it looked as though she was rallying and I thought "look, let's stop the morphine and give her another chance" but that would have been so wrong - poor woman was desperate to be out of the situation. She had threatened to pull the ventilation tube out but the consultant had to tell her that she would basically suffocate if she did that and it would be very unpleasant - so their way was better. It took a long time because Mum had a strong heart and it wasn't giving in easily, maybe the same goes for your uncle.

Everyone is different - in the end you can only do what will help you through this - if you really feel the need to go to your uncle tonight, then perhaps there is a reason; if you don't go and he dies in the night, how bad will you feel? These are all "unspeakable" thoughts of course - but think them anyway, it's normal and ok.

Hope you get some sleep soon - I have to go now but sending you a ((hug)) anyway because I know how awful this situation is.

BlackLetterDay · 22/02/2010 01:10

Is it the liverpool pathway? sorry if I have it wrong but it rings a bell. From my understanding (I used to be a HCA and dealt with dying patients) this pathway is used when patients will not recover. I think the most important part of the pathway is the drug administration, it allows for a morphine pump/patch etc and provides hyoscine etc for end of life symptoms.

People who are comatose will not be fed or watered if I remember correctly, I'm not sure about fluid drips tbh. Swabs will be provided to keep his mouth hydrated, we did these often. Pineapple juice is good for swabbing out mouths, dissolves all the gunk. I'm so sorry you are going through this, from my professional and private life I know that watching somebody die is probably one of the hardest and most devastating things you will ever do.

Original poster
1legmummy · 22/02/2010 01:22

yes it is the liverpool pathway.

I was not particularly close to him until he was admmitted to hospital 5 weeks ago, but visited and have been every day since.

He is a lovely old man, from what I have learnt in our short friendship, he hates being thirsty or a burden.

I sit with him and chat, the worse thing is knowing he can hear me but cant respond in any way.

Thanks the pineapple juice idea will be used tomorrow
xxx

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Original poster
1legmummy · 22/02/2010 01:24

thanks for the hug thumbwitch - feeling better for your thoughts xxx

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solo · 22/02/2010 01:28

Second what thumb says about going to him if you feel that 'need' to...would you want to be with him when he passes? it can be a 'good' thing to do for both of the parties involved ~ him because he will have someone holding his hand and you because you will know you've likely brought him comfort.

cathcat · 22/02/2010 01:30

this is a hard thing you are going through. I think you are a lovely person to care so much for this person at this time. big hugs.

Original poster
1legmummy · 22/02/2010 01:34

yes I do want to go to him but several things stopping me.

I am not a Relative (proper)

He and his Wife had no children so my Husband and his Neice are important to him as is his Brother.

The four of us have been with him evreyday, but I dont feel it is my place to be the one who needs to go and visit inthe middle of the night.

If I go and something happens my Husband will have to stay at home with the children.

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solo · 22/02/2010 01:38

Difficult one there I'm sorry...could your Dh go now on his own?

TheLadyEvenstar · 22/02/2010 01:49

Having spent the last 24 hours of my darling dads life by his side and holding his hand as he died, i really would never ever advise anyone to do the same.

I still 6yrs on cannot forget his face as he took his last breath....

and on that note i am going to go and get a large glass of wine

luluvalentine · 22/02/2010 01:50

re the mouth being dry thing - they can give you little sponge tipped thingies that you have a little water on and you can gently rub round their mouth to add a little moisture and it kind of helps - I just re read and think this is what black letter day is talking about.
its a horrible time so hugs

Original poster
1legmummy · 22/02/2010 01:56

Thanks everyone, my dh is snoring in bed!!! not heartless but believes everything Doctors say and knows the time is near and that he is ok

I am so grateful for all your comments, I know for some of you they are difficult to talk about so big hugs to you.

I just dont like the thought of anyone suffering, I am very naive to this and watching someone waste away is horrific.

Go to bed now - I am ok xxxxxxxxxxxxxxxx

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solo · 22/02/2010 02:02

Take care 1legmummy, prayers for your dear uncle.

Will add that I watched my Dad pass away 6 months ago and am so glad I was there for him. I had watched him suffer cancer taking him away for 9 months and was well prepared for his passing(in that I knew he was going to). I wouldn't change a thing except that I'd have stopped my brother from leaving an hour before Dad died...

spingspong · 22/02/2010 02:09

I too was with my dad when he died, with my DH, mum, brother, SIL, aunt and uncle - he was heavily dosed on morphine and I'm not too sure as to how awake he was but the most important thing was that he wasn't in pain. I think at that stage food and drink doesn't really come into it.

Sorry for your situation, wishing you the best.

Original poster
1legmummy · 22/02/2010 02:14

xxxxx

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WynkenBlynkenandNod · 22/02/2010 04:53

Really sorry you're all going through this . My MIL had cancer and a stroke, they lived abroad. The decision was taken by her family to withdraw food and fluids. After 5 days she was still alive and seemed to rally so her DH gave her yoghurt and restarted yoghurt. She lived another year after that but it was a dreadful year and it was clear she had wanted to die before.

Original poster
1legmummy · 22/02/2010 05:25

Thankyou everyone at about 3.00am I had a call and missed him by 10 minutes.

I am so upset that I did not follow my head and go in like I wanted to.

But, he is at peace, I have given him a kiss and said goodbye.

Thankyou all so much for talking to me and helping me through

xxxx

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WynkenBlynkenandNod · 22/02/2010 05:50

1legmummy, so sorry, take care xx