1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Is tube feeding the right thing?

Discussion in 'End of life care' started by clareglen, Mar 27, 2015.

  1. clareglen

    clareglen Registered User

    Jul 9, 2013
    I haven't been on the forum for a while as my mum has been in a lovely care home for 5 months which removed the stress from me after years of caring for her. However, she had a fall in the home & broke her humerus. Dr was called & ambulance but they had to give her morphine for the pain & she was strapped onto a body board as they didn't know what she'd broke till at the hospital. Consequently, she missed her Parkinson's meds & went downhill & unable to swallow. They got patches on her but not the same. She was awake the next day but after this has been asleep & nil by mouth for over 2 weeks, had dextrose drip. I'd said she'd stated DNR decades ago before dementia but hospital didn't think she was at that stage. I insisted on painkillers & for her to be comfortable. On Monday they persuaded me to consent to a nasalgastric tube. They're now giving her food, liquid & Parkinson's meds through this. She now has septicemia & sepsis so has drip for other drugs. She is just asleep & has been responding to my voice but today didn't, just asleep. Looks peaceful. Her heartrate, bloodpressure, O2 levels are all normal & hospital think they can get her back to walking & talking. I can't see it myself. She struggled to walk so being in bed for weeks I can't see her walking again. My question; is tube feeding right? Is it just prolonging suffering? She's 86. I've been guided by the hospital but my gut instinct is it is unnatural. The ward is full of frail ladies who are skin & bone, bedridden & have dementia. It is a picture of Hades. Most are in distress except my mum who is out of it, in a vegetative state. I am an only child so have no siblings with which to discuss & thought the Forum will know. I want to do the right thing for her.
  2. WIFE

    WIFE Registered User

    May 23, 2014
    Clareglen - how sad for you and your Mum - hard enough to have dementia but then the fall and now hospitalised, feeding tube and drugs. I feel you have to follow your instincts - I signed a form at my husband's NH for DNR, no feeding tube without full consultation and EOL care rather than further antibiotics. Do you have a Health and Welfare Power of Attorney - if so you do have the authority to make decisions regarding your Mother's future care and treatment as I did for my husband at the end. Talk to the Doctor in charge of her care but do not be bullied. . Be strong. Thinking of you both WIFE
  3. Perdita

    Perdita Registered User

    Jun 22, 2009
    Suffolk, Uk
    I think your gut instinct is right Clareglen- I agree with WIFE , talk to the Dr and tell them your concerns.

    Your description of the ward as Hades struck home with me, so sorry you and your mum are having to go through this:(
  4. clareglen

    clareglen Registered User

    Jul 9, 2013
    Thank you both. I don't have POA Health & Welfare but they are consulting me & asking for my consent. Think I've seen this on here that they have to consult next of kin by law. I see a Dr most days but just routine writing in her notes & they ask me how responsive she is! The ward rounds, where there is consultant too, only seem to happen once a week on Mondays (I'm sure they used to do them every day years ago). They said to give it a few days to see if meds made improvement. She is as she never would've wanted to be. The owner of the care home popped in to see her & I've also spoken with them & they said hospital should be having EOL conversation with me which they haven't. I think come Monday I will have that conversation with them. I had never thought about not having antibiotics. Thanks for your input.
  5. nmintueo

    nmintueo Registered User

    Jun 28, 2011
    With your mother in the state you describe, I personally would question whether extending life with tube feeding can really be considered to be beneficial to the patient.

    Here's one previous thread, with links to some related discussions:

    Tube feeding
  6. BR_ANA

    BR_ANA Registered User

    Jun 27, 2012
    It seems a crisis. Maybe, if she wake up, she could eat again. Maybe her other disease could fasten an end.

    I would wait some days/week to decide
  7. clareglen

    clareglen Registered User

    Jul 9, 2013
    Mum had been sick this morning as her stomach was too full. Nurse had stopped the feed. I said I wanted it stopped full stop. Nurse said I'd have to speak to Drs on Monday. I said I didn't want her to suffer over the weekend. Mum was asleep, unresponsive but looked pained. Nurse gave her some morphine, but not routinely giving it. I'm not sure if she was in pain or feeling sick. Nurse said it's difficult to stop the feeding legally as she'd had the same problem with a relative & hospital are increasingly doing it because of accusations of neglect & suing (our hospital is under special measures). Nurse said she wouldn't force feed her while she was on. But tonight another nurse was setting up a feed. I said I didn't want her fed but she said they didn't have authority to stop it till I spoke to Drs on Monday, but she would reduce it by half & give it slower as she thought the amount Dr had specified was too much for a small stomach. I don't have POA Health & Welfare but hope consultant will see sense on Monday. When I said my mother did not want resuscitated he said he would mark that up as they are not allowed to use common sense anymore. Hoping he sees sense on Monday.
  8. nicoise

    nicoise Registered User

    Jun 29, 2010
    Dear Clareglen,

    Whilst the nurse is keen to be keeping up the quantity of food administered via tube, is your mum getting adequate Parkinsons medications for her digestive system to work?

    It's no good them pouring food down into her stomach if it cannot then be digested and passed and processed through her system physically and then expelled as would happen under better and more normal circumstances.... I'm not sure that they fully understand the mechanics of PD and the medications, and could be causing her pain and problems through a misguided desire to be seen to do the "right thing".

    I have posted on this topic in older threads as my mum had PD and LBD, so I was familiar with these challenges and the question of tube/peg feeding. I knew my mother was not in favour of prolonging life when the quality had gone, so I was able to follow her guide and refuse further treatments; but I did have to be clear with the doctors involved and discuss with them at length the reasons behind my thinking, which very much echoed yours.

    I do hope that your mother's welfare takes precedence over policy in the eyes of the medics and nurses, and that you are listened to.
  9. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    #9 MrsTerryN, Mar 29, 2015
    Last edited: Mar 29, 2015
    Clare like you I am an only child. Mum has been refusing nursing home food and fluids for quite a few weeks now. She has lost 7 kilos on four weeks she is now down to 49 kilos. The nursing home has brought a geriatrician to discuss the choices. I am currently taking in a meal plus treats daily. She isn't always eating those either.
    Mum is still relatively mobile but incontinent and often delusional.
    The geriatrician rang me the day before to discuss my views on assistance for mum. The nursing home was requesting anti psychotic drugs as mum was quite delusional and walls and birds are talking to her.
    However the sedation would also have her less responsive. I said I would prefer that mum wasn't sedated and that the risk of falls was just taken, as the sedation would have her sitting and sleeping more an s the risk of falls lessened . The geriatrician w a s lovely and she talked with me for about half an hour .
    Mum had previously told myself and one of her close friends that she didn't want to survive with dementia if she got to the state her mother, my grandmother, got to. She is well and truly at that stage possibly further.
    So for mum it is quality of life. There will be no iv drip to rehydrate, which is what they were considering , there will no longer be any kidney function tests.
    Mum if she doesn't improve with eating and drinking with the what the nursing home and I are doing for example her favourite meals and drinks then the next stage is palliative care.
    Mum is wasting away though she does still garden at the home and joins in with activities.
    if her delusions aren't distressing her which currently they aren't then I want her to trundle away doing her own thing
    One out of the many things I have learned here at TP is that dementia progression and stages are a piece of string , no one can pick it.
    The nursinghome and the geriatrician said mum is in her final year/s due to her dementia. Like many others mum has negible other health issues
  10. clareglen

    clareglen Registered User

    Jul 9, 2013
    Nurse did know this, mentioned stomach can stop working, but Parkinson's meds which they're administering up the nose & via patches are clearly not working. They emptied her stomach by drawing it back off, then proceeded to put fresh in! Can't wait for Monday. I'll be jumping up & down!
  11. clareglen

    clareglen Registered User

    Jul 9, 2013
    Mum on end of life care now.
  12. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    I am sorry to hear that clareglen but at least you were able to discuss things with doctors. Wishing you strength for the days a head , much love to you xxx

    Sent from my iPhone using Talking Point
  13. WIFE

    WIFE Registered User

    May 23, 2014
    Thinking of you Clareglen and your dear Mother as you face this difficult time. Take care of yourself and be strong. Loving thoughts WIFE
  14. Quilty

    Quilty Registered User

    Aug 28, 2014
    So hard when you are trying to decide whats best

    Follow what your gut instinct is telling you. You know your Mum best and can read her face etc so stay strong.

    This is such a hard one. Im lucky that while she was still coping well my Mum spoke to me and her GP to have a DNR put in her notes and also no artificial feeding. It will be a hard day if it comes but I know her wishes. More people need to talk these things through when they are still able to decide for themselves.
  15. WIFE

    WIFE Registered User

    May 23, 2014
    Sadly Quilty most of us do not give a thought to the prospect that one day we might need tube feeding - it seems to creep up on patients - especially those with dementia although my Mother had cancer of the oesophagus and it was discussed near her end - she said no and we had to respect her wishes. If I had suggested it to my Husband when he was still able to make informed dcisions he would have thrown something at me I am sure and told me "Its being so cheerful that keeps you alive" - his usual retort when something nasty came on the scene. Frequently the decision becomes that of the Doctors and next of kin- a horrible one to have to make.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.