any advice on peg feeding

Discussion in 'ARCHIVE FORUM: Support discussions' started by eagle, Mar 2, 2007.

  1. eagle

    eagle Registered User

    Nov 11, 2006
    4
    kent
    Hi i have not posted for some time but wondered if anyone can offer any advice as the advice i was given last time was extremely helpful to me.

    My mum is in a nursing home and is the last stages of AD (the diagnosis is unclear and could be lewey body). She is completely bed ridden and unable to move (except for her lower arms). She no longer recognises us and sleeps most of the time. We have managed to arranage with the GP that she only receives palative care now as her quality of life is zero. She has been on a peg feed for the last 2.5 years after a spell in hospital when she broke her hip and then refused to eat and drink. The dementia became rapidly worse at this stage. She does not take anything orally now. Can anyone offer advice about the peg feed as we feel strongly that this is the only thing that is keeping her going. The doctor has advised that we cannot do anything about this. The dietician has said that they want to increase the calories of the feed as she has lost weight recently we are trying to stop the increase in the feed happening. It seems morally wrong to keep her going like this, as all of her choices have been taken away from her by the peg as she cannot refuse food, we just want her to be allowed to slip away gently and not be forced to carry on because food is being pumped into her artifically through the peg.

    Any advice would be very gratefully received. Thank you
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Mar 2, 2007
    Last edited: Mar 2, 2007
    Sorry I can not give you any good advice , sure someone will pop in to do that just wanted to say sorry to hear about what is happening to your mother xx


    PS I did find this http://www.alzheimers.org.uk/Facts_about_dementia/How_dementia_progresses/info_later.htm

    Interventions
    If someone in the later stages of dementia becomes seriously ill, there may be a discussion about whether to try to prolong their life or to allow them to die naturally.

    Interventions may include resuscitation after a heart attack, antibiotic treatment for pneumonia, or giving the person foods or liquids other than by mouth.

    Resuscitation may be unsuccessful in people in the final stages of dementia; even when it is successful, there is a risk of causing further brain damage.

    Only the doctor can make the final decision about whether to give or withhold treatment in the final stages of dementia. However, the views of relatives and of the person with dementia should always be taken into account where possible.

    It may be helpful to discuss the issue of interventions with the person with dementia at an early stage in the illness, when they can understand. Some people with dementia put their wishes in writing in the form of an advanced directive (or living will). This outlines the kind of care and treatment they would like in the future when they may no longer be able to communicate their wishes. It may state whether they would want interventions to be made or whether they would prefer to let nature take its course, providing they are protected from undue pain or distress.
     
  3. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Eagle

    Sorry to hear about your Mother and I can't give you any advice, because I don't even know what peg feeding is.

    I support you, in your decision to let your Mother just sleep gently and peacefully away. I know that is what I would want for my parents

    Take care of yourself

    Alfjess
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    #4 jenniferpa, Mar 2, 2007
    Last edited: Mar 2, 2007
    What an impossible situation to be placed in. I have no advice, except possibly (just possibly) changing her doctor to someone who is more attuned to your wishes. The problem is, once the peg is in, it's in and they're (that is the medical establishment) very unwilling to make changes to treatment. As a family member you have, as you have discovered, very few rights in this situation.

    The BMA has some information on these issues available on their website http://www.bma.org.uk/ap.nsf/Content/Endoflifedecisions, plus some more detailed information which must be purchased. Perhaps if you show the doctor that you have fully researched this you can get him/her on your side.

    Jennifer

    P.S. I don't know if it's any consolation to you, but from reading other peoples posts on the board, it seems likely that if she is losing weight she may simply have stopped metabolizing food, as this seems to happen sometimes when they are at the last stages of AD. Even an increase in calories will have no effect if that is the case.
     
  5. eagle

    eagle Registered User

    Nov 11, 2006
    4
    kent
    Thank you for your replies and support, it helps to know i am not alone in wanting this. i will look at the links mentioned.

    I should have explained peg feeding previously (sorry you get so used to using these terms), mum is artifically feed through a 'peg' in her stomach so that all food/fluid goes straight into her stomach, nothing passes orally. All nutrition that she receives is an artifical subsititute which just provides the calories needed by her body.

    jennifer - thank you for the end comment i did not realise that and it is comforting to know that even if we cannot stop the dietician increasing the calories her body may not be able to use them anyway now.
     
  6. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Eagle

    You shouldn't have had to explain peg feeding, just because I am ignorant of the proceedure:eek:

    Fortunately, I haven't reached that stage yet with Mum and Dad and hope I never do.

    But thank you for your explanation, now I know, if it is ever needed, what they are talking about and the implications

    Thanks Alfjess
     
  7. soulsmilin

    soulsmilin Registered User

    Feb 13, 2007
    43
    Tyne and wear
    peg feeds

    Dear eagle,

    Just a couple of points, peg feeds while at times can prolong life by ensuring adequate nutrition they can also be life enhancing, if your family member did not have enough nutrition you might well see a developement in more confusion from dehydration and increased risk of developing bed sores that can become easily infected and very painfull, due to lack of nutrition, delayed wound healing, and decreased respiritory and cardiac funtion.

    If family member was not already on a peg then this well could take time to organise and they may not recieve feeding for a few days, as your family member is already on a program, It may be hard to change this, medical staff have to follow what is in the patients best intreast, you may find that by talking to the staff, she is being maintained on enough nutritional intake to maintain that her body is not deteriorating rapidly in the formentioned ways, and it may be worth taking to them inregards any extreme messures. please please talk to the staff, I would think that you both and they would want a dignified end of life for your loved one,

    my thoughts are with you at this most difficult of times

    soulsmilin
     

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