PEG Removal - legal and ethical?

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My poor old mum (87) has dementia, and was living in a care home. 6 month ago she had a severe stroke which left her paralysed down one side and with very little movement on the other. She lost all speech and also the swallow reflex. The hospital, presumably wanting to ship her out as soon as possible, fitted a PEG and she returned to the care home (to the nursing wing). To their credit they have looked after her well, she was able to communicate with facial expression and some sounds, and she was able to sit in a chair (moved with a sling) etc.

A couple of months ago she had a bout of illness and it seemed she was at the end, and although it looked like pneumonia was going to get her she fought through and is still going. However she has had more mini stokes and is now completely unable to move and totally unresponsive, We were told the only thing keeping her alive is the PEG, and we should consider intervention - ie stop the feeds. We agonised for a couple of weeks, watched her having no life at all, no chance of improvement, researched it and found that although it seems a cruel thing to do, people in her situation don't feel thirst and hunger the way healthy people do and she wouldn't suffer. So we finally made the decision that PEG feeding treatment should be withdrawn. Then we were told, no they can't do that, it's not legal, so now we're back to watching her die VERY slowly, waiting for the next major infection to end her suffering.

Has anyone come across this before? Can't we stop the PEG in the same way a ventilator would be turned off?

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  • Posted

    I so hope you are still out there and will respond to this .... Our family are in the same predicament, I.e. my family member does not have mental capacity - she has had a massive stroke (bleed as opposed to clot). She was feeding well orally and ng (nose feed) was removed completely and she slumped as not receiving enough nutrition so very reluctantly we agreed to a peg on the grounds that rehabilitation could not move forward as lack of nutrition was imparing the rehabilitation. It then turned out that they decided to delay the peg as she was doing so well orally. Unfortunately she deteriorated so the peg was back on and is scheduled for next week. In the meantime she is on a mixture of oral and ng at night only (as opposed to being completely withdrawn) and is responding well. Prior to finding out the fact that she is responding well we have already penned a letter asking for the criteria required for plug removal. Are you aware of of this is. Any advise would be much appreciated. Please help ..... Soon
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  • Posted

    I'm sorry I have only just seen this.  I wonder how your mother is at the moment.  I would just like to say that when my mother was in hospital, they tried fitting a feeding tube down her nose as she was unable to swallow.  After three failed attempts and much discomfort for my mum we/and mum told them to stop.  They then talked about the possibility of a PEG but we refused it and because of mum's poor health problems

    the doctor's agreed.  Sadly mum passed away about 3 weeks later.  I truly believe mum would not have wanted the PEG.

    I hope that your mother's suffering will soon end.  

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  • Posted

    Unless your Mum has made her wishes known beforehand i.e. advanced care plan or advanced directive, as NOK you would have to get legal permission to act in her best interests, if she is unable to make the decision for herself. It is so hard to watch a loved one deteriorate this way. Is she comfortable or in a lot of pain? Is she distressed and aware of what is happening to her?
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  • Posted

    I am in the same position.  Mum had a brain heamorage in 2009.  She had various brain operations and although she was in a wheelchair and required carers to get washed and dressed she could hold a conversation and enjoyed her meals.  In 2015 she got an infection in the shunt and had to have it removed.  A peg was inserted as she was having difficulty swallowing, we weren't giving any information about the peg, are initial understanding was that it was a temporary meausre until her swallow improved.  Her swallow hasn't improved.  She is in a care home now, she is unable to talk, we get some response from her, she can squeeze are hand to answer yes and occassionally manages to say a word or two.  Quality of life is very poor.  Very sad to see.  It's distressing to see her continue like this.  

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