Refusal of PEG feeding

[rookiecarer]

My husband is considering refusing PEG feeding. Has anyone any experience of this or advice to offer?

[shasha]

all i know is that i def dont want a peg fitting - i had an experience when in hospital in 2013m which freaked me out i was in a two bed ward with an old lady who was peg fed to keep her alive and all she did was to call for her husband and he was obviously dead

the way i look at is ... if you need to be kept alive for whatever reason then you might as well be dead, sorry if this is not what you want to hear but i think you should do what your husband has requested

[rookiecarer in reply to shasha]

No Sasha. This doesn't freak me out. I found your comment helpful. Kind regards

[peterjones in reply to rookiecarer]

\HI ROOKIECARER I THINK ITS YOUR OWN PERSONEL CHOICE MATE IF BY HAVING A PEG FITTED IT WOULD ALLOW ME TO GET UP AND GO SO TO SPEAK OR MY SPEECH COME BACK TO ME BUT TO LAY THERE LIKE A VEGETABLE I DO NOT THINK SO IF YOUR HUSBAND AGREES TO HAVE THIS DONE ALL WELL AND GOOD I KNOW LIFE IS WORTH HANGING ON TO BUT I THINK ONLY IF YOU CAN LIVE IT IM ALSO SORRY IF ITS NOT WHAT YOU WANTED TO HEAR BUT LIFE CAN BE A BIT UNFAIR AT TIMES CANT IT

I MYSELF WILL NOT BE GETTING ONE FITTED UNLESS A CURE OF SOME SORT LOOKS VERY PROMISING SEE YER MATEY REGARDS TO YOUR HUSBAND

BUT HAVE A GREAT DAY DONT LET IT WORRY YOU TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER

[rookiecarer in reply to peterjones]

Thanks, Peter. It's good to hear from another person with PSP who can really empathise with my husband's predicament. I can understand his reasons for being reluctant to go along with it. What I can't understand is the medical profession's reluctance to discuss the cons. Doctors refer us to lawyers about advanced medical directives and lawyers tell us to consult the doctors. I'm not trying to persuade him one way or the other. I just want to get as much accurate information as possible.

Warmest wishes from a very cold Scotland.

[jillannf6 in reply to peterjones]

peter

u r so right

[jillannf6 in reply to peterjones]

peter

u r so right

[Hidden]

Hi rookiecarer

From general information, about half of PSP sufferers make an early call NOT to have PEG feeding. This can be for different reasons, but mostly about their quality of life. PEG feeding can certainly help some with severe dysphagia, and prolong their life (some with improved quality and others find little improved quality). However, they can still succumb to aspiration pneumonia through mouth secretions. It is a personal choice.

My wife has written in her Advanced Health Directive (Living Will) not to have PEG or be treated if she develops aspiration pneumonia (plus other items about treatment/feeding options).

I trust your husband will make an informed choice and have it in writing.

All the best.

T.

[rookiecarer in reply to Hidden]

Thank you Strelley. We didn't know that the number of PEG refusers was as high as that. This information is really helpful. Kind regards.

[Kathryn]

As the replies so far have been negative I think someone should give the other side. My husband, who has since died, had a PEG fitted about nine months before his death. The procedure was straightforward and he had no problems in accepting it. We were very well supported by the nutritionist. I am convinced that he was able to maintain some limited mobility and speech until a few days before he died because he was well nourished. Having the PEG meant that he had a properly balanced diet,and that the few things he was still able to eat: mashed banana etc were for pleasure and normality rather than essential nutrition. Before he had the PEG fitted he had lost 2 stone, after the PEG was fitted he maintained a healthy weight and , again until a few days before he died, had no problems with his bowels or bladder. He lived at home until five days before his death and i was able to manage him with very little help.

Our experience of the PEG was very positive.

[Hidden]

Good morning, rookiecarer,

It must be your husband's choice.

Christopher

[rookiecarer in reply to Hidden]

Of course it is. You're absolutely right. I'm just trying to get as much information as possible. Kind regards.

[coyle51]

Hi Rookie carer. I agree with barnacle, ultimately it's your husbands choice. My mother has chosen not to have a PEG but this was not unexpected as she has never liked taking even medication, let alone any significant medical interventions. she is currently managing on puréed and soft foods. Whatever you and your husband choose will be the right decision for you. Good luck.

Coyle51

[rookiecarer in reply to coyle51]

Thank you. It will be my husband's decision, not mine. He's a bit of a ditherer and I'm worried that time is not on his side. My best wishes to you and especially to your mother.

[cabbagecottage]

my mother had a stroke , a very bad one , they asked her if she was willing to have a peg fitted . o don't really know if she really understood what it was or what it entailed but she nodded her head yes!

she had absolutely no problem with it and regained weight loss . lived a further three years . she was able to take puréed food alongside it .

[rookiecarer in reply to cabbagecottage]

Thank you for that. It does make sense if there's a possibility of recovery. Unfortunately PSP is progressive and incurable. Take care.

[cabbagecottage]

I'd the time comes and my husband is asked if he would like it , I will leave it to him to decide .

[rookiecarer in reply to cabbagecottage]

That's exactly what I intend to do. I'm just gathering information for him.

[MelvynS]

My brother in law Victor has psp. Diagnosed about five years ago. He had a Peg fitted three years ago following episodes of aspiration pneumonia. He benefitted greatly in the early stages. The real problem was that no decision was taken at the time on when it could be removed. Having one fitted is a much easier decision than arranging to have it removed as the latter represents an acknowledgement that the patient is going to be allowed to die. Victor can no longer indicate his wishes. He has no evident quality of life and suffers all the indignities of total care as he can do nothing for himself. It may also begin eventually to put major strain on the financial circumstances of his family as he is being cared for at home. My advice would be only to have a Peg fitted if all concerned agree the time at which it should be removed, governed by the condition and circumstances of the patient.

[rookiecarer in reply to MelvynS]

Thank you so much. This is exactly the kind of information I need. I hadn't thought about making decisions about having it removed. I really do feel for all involved. Their situation is so sad and frustrating.

[Pippalina]

My husband has refused to have a peg fitted has refused to be rescucitated or to be hospitalised if the need arises. As he discussed this with his consultant a year ago and signed a form declaring this which is on file with his consultant and GP I can only abide by his wishes.

[rookiecarer in reply to Pippalina]

My husband has already signed a 'DNR' form. I will respect any decision he makes. Best wishes.

[dkt48]

Hi rookie carer. My husband is in the end stages of PSP. When he was first diagnosed about 2 1/2 years ago, we were advised to talk about the feeding tube. My husband too has refused one even though I was wanting it for him. In the end I conceded to his wishes. They have so little control over their condition as it is, I couldn't in good conscience take this request away from him even though some of the children are angry with me over it. It was his call and I am honoring it as hard as it is. I wish you peace as you come to terms with this difficult decision.

[rookiecarer in reply to dkt48]

Thank you for your helpful comments. Life as a PSP carer is tough enough without criticism from family members. Ethically you have to respect his request. He is at the sharp end. I do feel for your situation and admire your stance. Warmest regards.

[cabbagecottage]

they had told us that my mother could have it removed if ever the time came , it didn't occur and the last two week of her life they reduced the feed as appropiate .

I am talking about a stroke of course but much of it is the same . she had a severe stroke and was in a nursing home so had nurses all time .

[jimandsharynp]

PEG feeding is a good discussion to have early on in PSP. There are pro and con answers to the question of having PEG feeding. The CurePSP.org site has a great resource area and in that area is a good document/video on all the sides of this question about PEG feeding. Check it out. Jimbo

[Hidden]

Hi, rookiecarer,

I am so glad Kathryn and others have offered you a positive view of the PEG. My wife, Roisin, chose to be fitted with one 15 months before she died of a bronchial infection. In that time her strength and her weight recovered and she was able to walk again, assisted of course. In effect, Roisin bought time during which she was able to live without the constant struggle over food - the PEG system fed her overnight while she slept - and so make time for more stimulating things, friends visiting, longer trips out, listening to music and audio books, etc. We were never told that the system would have to be removed as she approached death, and neither was it. Without the PEG my wife would have died at least a year earlier. I hope she was glad that we both had that extra time together but she was under no illusions about the inevitable end result.

Christopher

[jillannf6]

ditto aahashaa

[peterjones in reply to jillannf6]

hi jill well how are you today ok i hope\\\\ you are a lady of few words matey I do know its difficult for you have you had any good falls lately !!!!! I had one in my magic room nearly knocked me out hit my head on the bookcase had a lovely bump but no blood or hospital thank goodness

then the day before I fell over at the check out in woolworths store had just paid my money and turned around and bingo mate over I went just took a bit of bark off of my arm where the rest of it is so it did not matter

much I had a nice young woolworths girl try to pick me up and then a stocky aussie came and helped her they were both very concerned about my heath or falling in there store she dashed off to get me a bottle of water

buit I was ok just shaken up a bit that's all and just a bit more bark off of the arm well mate I will say goodnight to you and ian A VERY HAPPY AND PROSPEROUS NEW YEAR TOI YOU BOTH SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP BLOKE TAKE CARE MATEY

[Heady]

Are you sure you have PSP. Peter Jones Queensland Australia? Or is this just a ruse to attract young women to help you. There does seem to be a theme to some of your falls!!!!! S does try, but is not in your league, although always enjoys the attention if hospital treatment is required!

Stay up right, bark will only replace itself so many times!!!!

Lots of love

Heady

[peterjones in reply to Heady]

\\hi heady wouldn't it be lovely to wake up and find I never had psp its certainly not a ruse to get young women mate I think ones enough all I can handle anyway see yer take care young lady see yer peter jones queensland Australia psp sufferer

[Heady in reply to peterjones]

Yes it is a nice thought, every morning I live in hope! Look after Mrs Jones, she sounds a treasure, if you don't notice these young ladies!!!

Lots of love

Heady

[peterjones]

one old boy well he looked older than me came over to me and offered hes help when I fell in a car park once \\ and he had just had an operation the week previous anyway mate I cant spend all night talking about sheilas and old men so i will say see yer mate take care regards to S ======= Reg ====== Peter Jones queensland Australia psp sufferer

[peterjones in reply to peterjones]

DY HALF OF THE FRONT OF MY E,M IS MISSING SO YOU WILL HAVE TO GUESS WHAT WAS IN THAT TAKE CARE MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER AND BIRD WATCHER FEATHERED KIND ONLY MATE

[Heady in reply to peterjones]

I dread to think! Hope it was polite. S and I are avid bird watchers as well, but only in Southern Africa. They are all pretty over there and lots of different varieties!

Lots of love

Heady

[cabbagecottage]

often things are left until the last moment . . pegs are most often as a last resort when theY could have Maybe fitted earlierwixh can give better quality of life . the same thing goes as far as using any aid which keeps you safer with less struggle.

I don't think it's giving in in fact the opposite .

[Margie1000000000]

I am interested in this feed as my father 73 has COPD, and recently diagnosed with severe dysphagia. A small growth on his lung cannot be biopsyed due his COPD not under control. Peg tube is the only treatment option. He has made it very clear he is not having it. He is extremely short in breath from his constant aspirations. On a maintenance antibiotic, is eating though he says he has no taste for it, but knows he needs to. He has been referred to palative care team. I have been told he will continue to get very sick etc. He is still functional in that he can walk a few steps to get his tea etc. I am wondering what can I expect to happen? I am worn out not sleeping incase an emergency occurs.