1. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I am wondering whether anyone here has any experience of their loved ones being PEG fed? My mum has been finding it increasingly difficult to swallow and consequently is taking in very little in the way of food or fluids. It seems that the time is approaching when PEG feeding may have to be considered. I'm not sure whether this is likely to be presented to us as a fait accompli or whether we are likely to have any say in whether it happens or not. I'm also not sure at this stage what decision we would make. It seems to be an ethical, moral and religious minefield and not a situation I ever wanted to be in.

    Any advice would be appreciated, although I don't recall the topic coming up that often.

    Brenda
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Brenda

    So sorry your Mum is at the stage where she might need a peg.

    I think you'll be asked whether you want it, and it's an awful decision. I had to make it with my mum, and it was awful, even though I knew she didn't want it.

    My mum was 92, and was fit and well until she had a severe stroke, which left her paralysed and unable to speak. She didn't want to live, wouldn't eat and constantly pulled out her naso-gastric tube.

    When I was asked about the peg, I said she had made her decision and I didn't have the right to overrule her. But I did feel terribly guilty.

    I did come under pressure from one staff nurse, a catholic who thought my mum should be kept alive, but the other nurses agreed with me.

    It's a very personal decision, and only you can make it. I knew my mum had had a good long life, and wanted it to end. You are in a very different situation.

    I'll be thinking of you and your mum,

    Love,
     
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
  4. Tina

    Tina Registered User

    May 19, 2006
    420
    Dear Brenda,

    can't really offer any advice, only some experience. The decision will have to be yours and you'll make the right one in the end, I'm sure.

    My great-aunt had a severe brain haemorrhage (after a series of ministrokes) which left her unable to swallow, speak, move the right side of her body. When she was first in hospital, she was on a drip for fluids, because the docs weren't sure she'd last. In fact, the decision was made by the family at some stage to take her off the drip and enable her to pass away peacefully, which we knew was what she would have wanted. Still, a horrible decision to have to make. Anyway, after three days off the drip and constant monitoring by the docs and nurses, my aunt showed very strong reactions to certain tests which were carried out, and she was put back on the drip. She continued to stay "strong" and "stable" in the condition that she was in, there were even some slight improvements, such as she was awake more, she returned pressure when you held her hand, she looked and felt for your hand if you rested it on her chest or the bed, she followed your voice when you spoke to her by turning her head in the direction from which the voice came.

    There came a point where different nutrition had to be considered since the drip for fluids wasn't really enough. So she was fitted with a naso-gastric tube, which she hated and wanted to pull out. She tolerated it eventually, but the risk of her pulling it out was too high, so the docs suggested PEG feeding because there was no immediate sign of a deterioration and long-term feeding had to be dealt with in one way or another. She had a PEG fitted, which was totally unproblematic, no obvious discomfort, she dealt with it really well and tolerated the feed. It was explained to us really well what would happen and how the mini-operation would be done, we had information leaflets to look at and several really good kind nurses and doctors explained patiently and over and over again what would happen. We were so worried.
    The procedure was carried out under local anaesthetic, lasted about 30 mins, and for the first 12 hours she was closely monitored before they allowed a first feed to run through. At first the feed was run really slowly so as to make sure she tolerated it and didn't vomit and that her digestive system was working ok too. The next day the speed was upped, and she was monitored again very closely to make sure it was all ok. It worked well and her calorie intake was increased at some stage as well in order to help her maintain her weight and put weight on.

    She passed away about 6 weeks after the PEG had been fitted, but her death had nothing to do with the PEG. She had contracted a virus which resulted in vomiting and that in turn resulted in a chest infection. She died of bronchial pneumonia after we decided we didn't want her on antibiotics but just made comfortable and let nature take its course.

    Take care, thinking of you at this time. Your post brought back many memories.
    Tina
     
  5. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    That is one thing that I have been wondering about Hazel. My mum was a staunch Catholic and I have been wondering about the church's stance on it. I googled 'PEG feeding and Catholic Church' but couldn't find any definitive answers and ended up more confused than ever. I also suspect that if I spoke to a priest about it the answer would depend on which priest I spoke to, as it doesn't seem to be a black and white issue.

    I've also just realised that I said my mum 'was' a staunch Catholic rather than 'is' and am quite shocked that I have referred to her in the past tense. I think I meant it in the sense that she is no longer able to attend mass etc rather than making some kind of horrible Freudian slip and writing her off altogether.

    I had hoped never to have to make decisions of this nature. I don't even know what she would have wanted. I know that the nurse who spoke to my sister about it today didn't seem in favour of it and didn't seem to think that my mum would tolerate it very well.

    Brenda
     
  6. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Thanks for that link Margarita. It has made me realise that we have to consider the implications very seriously, because it seems that once the PEG is in there is no going back. I'm also wondering whether having the PEG would mean that mum would be bed-ridden and would need to find that out if it came to making a decision.

    Brenda
     
  7. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Thank you for sharing that Tina. I know it must have been painful for you. You have also made me think that, even if we do decide to go ahead with the PEG then that may not be the end of the painful and difficult decisions. Mum could also, like your great aunt, develop an infection and we would then have to decide whether or not to treat that.

    I really wish I knew what she would want.

    Brenda
     
  8. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    One thing I forgot to say earlier is that the nh say that mum always has to be fed by a qualified nurse now, rather than a care assistant. I think they are afraid that, if she were to develop aspiration pneumonia, we would somehow try to hold them liable, although I can honestly say that the thought wouldn't have occurred to me. It may that this is their standard procedure in all such cases - I don't think they particularly see us as being litigation happy!

    If we wanted to ask for continuing care funding then this factor would probably strengthen our case. However, finances just don't seem that important right now.

    Brenda
     
  9. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    #9 Sandy, Mar 24, 2007
    Last edited: Mar 25, 2007
    Hi noelphobic,

    I very sorry that you are facing this difficult decision. I have no first-hand advice to offer, but the Alzheimer's Society does have a very useful postion paper on palliative care that would be worth looking at:

    http://www.alzheimers.org.uk/News_and_campaigns/Policy_Watch/palliativecare.htm


    I would never venture a religiously-based opinion on a topic such as this, but the following article from an American Catholic web site is worth reading:

    http://www.americancatholic.org/Messenger/Jan2006/Feature1.asp

    Hope theese are of some help in making such a major decision.

    Take care,

    Sandy
     
  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Brenda, I just wanted to say how sorry I am that things are difficult for you and your mum. I can't help on this issue, out of my depth today, but want you to know that you are being thought about and sent kind regards.
    Deborah
     
  11. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Thanks for the links Sandy, which are very useful. I have read up quite a bit and the evidence so far seems to be anti PEG feeding in cases such as my mum's. It seems that PEG feeding does not necessarily mean that aspiration won't take place. Also, it seems that if someone is in the later stages, they will still lose weight even if they are being fed a reasonable amount of calories.

    It's such a tough decision to have to make.

    Brenda
     
  12. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Thanks Deborah. Feeling somewhat out of my depth also! :(

    Brenda
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Brenda

    Hope you've had a good night, though I doubt it!

    You've had lots of info, but it doesn't make the decision any easier.

    On the matter of religion, I think traditional catholics firmly believe in the sanctity of human life, and that it should be preserved at all costs (as in the Pro-Life organisation). However, I think many these days are more pragmatic, and believe that quality of life should be part of the equation.

    I don't think having the peg would necessarily mean that your mum would be bed-ridden, though you also have to bear in mind that the operation, though relatively minor, may bring about a deterioration in her AD. Or may not!

    I'm not helping, am I? Just giving you more to consider.

    I can only suggest that you try to work out what your mum would have wanted, based on the way she lived her life. Would she have wanted to stay alive for as long as possible, even if an invalid? Or would she have wanted to opt out before things became too difficult? It's so very individual, and you may have to make that decision for her.

    On the other hand, is there also a possibility that she may improve without the peg?

    So sorry you're in this awful position. Let us know how it goes.

    Love,
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    PS

    Forgot to say, take the guilt out of the equation.

    Whatever you decide, you'll be doing it in your mum's best interest.

    Whether or not you agree to the peg, and however long your mum lives afterwards, it will be the disease that kills her, not your decision.

    Love,
     
  15. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    #15 nicetotalk, Mar 25, 2007
    Last edited: Mar 25, 2007
    In my mums case it made no different to her weight, nutrition and so on, my mum hadreached the end stage of life, If i had known then what i know now we as a family would of said no to the drip no to antibiotics and well the food side of it she could no longer swollow the docotors agreed that nothing else was working for my mum. I think it isone of the hardest decisions anyone has to make about a loved ones needs especialy at the end.
     
  16. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I hope you don't mind me asking but did your mum have a PEG, and, if so, how long did she live afterwards?

    The nh is phoning the GP tomorrow. They have asked me how I would feel about her being admitted to hospital and I have told her I would rather avoid it unless there is some major benefit to be gained. She came out less than 2 weeks ago after having IV fluids and anti-biotics, but apart from eating a meal when she came back to the nursing home, there was no real improvement. She had a couple of teaspoonfuls of juice and the same of a meal tonight but was coughing a great deal afterwards. She also seems to be sleeping for most of the time.

    I know things must be serious because I was offered a cup of tea by three different members of staff - can't remember the last time I was offered a drink there! They have an area where visitors can make drinks for themselves so it's not an issue, just made me think that they were being extra solicitous towards me!
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Brenda, thinking of you and your mum tonight.

    Love and hugs,
     
  18. Tina

    Tina Registered User

    May 19, 2006
    420
    Hi Brenda, thinking of you tomorrow.
    My aunt was bedridden since she couldn't move herself after the massive stroke. However, while she had the PEG, the nurses did get her out of bed and sat her in a chair for a while each day if they felt she was able to cope with that. And she did cope. Having a PEG doesn't automatically mean patients are bedridden , at least that's what I think! Don't take my word for it. Each case will be different. But I know of cases where people have had cancer of the bowel / stomach / etc. and couldn't hve solid food and lived with a PEG for years and were up and about and out and about leading a very active life.


    You're right Brenda. PEG feeding doesn't mean aspiration won't take place. The worry with my aunt was that she might not tolerate the feed. As far as weight loss was concerned - yes, there was a bit, but not a significant amount. I was quite surprised to see her not losing as much weight as I had feared or suspected.
    She had lost her reflex to swallow and also to cough mucus up or anything else that would get trapped in her windpipe. The infection she contracted was one going round in the hospital. The infection itself was not related to the PEG, and she didn't die because she had a PEG fitted. In fact, she tolerated that really well. But when she contracted this damned virus, it did cause vomiting and some of the vomit went to the lungs which eventually caused the pneumonia.

    Sorry, I'm not helping much here, am I....it's a bl***y awful situation to be in. Thinking of you and sending you strength and good wishes.
    Tina
     
  19. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    #19 nicetotalk, Mar 25, 2007
    Last edited: Mar 25, 2007
    HI noelphobic

    sorry i did not mention in my post no my mum was never peg fed, it was never mentioned by her doctor at the hospital. The morning she was admited to hospital a carer at the restpite place said she had choked in the morning she then had a fit and they told me she was not responding to anything. At hospital they though she was just not eating properly she must of weighed about 5 stone, think they thought they could feed her up if only. She had a chestinfection, she had antibiotics and was put on a drip she could not swollow, they tried her with a few spoonfuls of food after a week still not change another week more antibiotics more fluied by this time the doctor felt no mater what they did now they had done all they could do. so now no food and she lasted 6 days without fluid. The fluid was just building up inher lungs was makeing things worse, It is just so uwful to have to go through this i know. my thoughts are with you , from my experience artifitial intrevenous just prolongs the suffering more but that is just in my case.

    take care kathy
     
  20. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    Difficult decision

    Hi Brenda,
    I'm really feeling for you, it's such a hard decision. I think it might help if you consider what Hazel said & how your mother felt about artifically prolonging life when she was well.

    My sister & I are lucky, my mother was adamant about not wanting to be on any kind of machine. So we have already decided not to do PEG feeding when the time comes.

    As for the religious thing - I think there is a great difference between helping some one along & letting nature take its course. This is what seems to come up for some people - the sense that if you haven't gone to all extreme measures, you haven't tried hard enough & it's the equivalent of euthanasia. This, of course, is ridiculous. I agree, talking to a priest about it depends on the priest. So pick your priest carefully.

    I have read in various places that there is a process in dying in which actually been fed will cause more discomfort than not. Whetehr this is true or not, who knows? No one has been there & back to tell us about it. It does make sense to me, that it's a part of the natural process.

    Again, think of your mother's opinions when she was well. That may help you come to a decision. And whatever decision you come to, it will be the right decision for you and your mother. Every case is separate and individual.

    Love,
    Joanne
     

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