PEG: My wife Janet has decided against... - PSP Association

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PEG

Micktick profile image

My wife Janet has decided against having a PEG fitted. When asked by our G P what she will do if she cannot swallow she replied I shall starve . He reassured her that that would not happen.

18 Replies

i agree with janet on this one

whateve rhappens i do not wan tot prolong my lfie when i can no longer eat or drink anhthhing - hopefully a bit fo a way off yet!

lol JIll

:-)

Hi Micktick

Mum was the same but I have to say that her 'no' response never changed even though she was asked again lots of times and it was comforting to know that mum still had that control over her life. Mum felt the same as you Jill.

x Dianne

Hi Mick Tick, Unbelievable !!!, did the Doctor tell you how they would achieve this? Do you live in America where they can insist you have a peg? Either the Dr has a solution that we all need to know or they where just trying to comfort your dear wife. If you ever find out what they meant I'm sure we would all like to know? With you both at a very hard place, take care Mummybear

Kathy profile image
Kathy in reply to mummybear

Hi Mummybear,

Just because you decide not to have a PEG doesn't mean you will starve to death. The person will continue to be fed a modified diet in what they call "at risk feeding". Essentially it means that you do what you can to minimise the risk of aspiration but accept that there is a risk. Eventually it is likely to be an aspiration pneumonia that ends the person's life and not starvation.

Take Care

Kathy

gauravasaxena profile image
gauravasaxena in reply to Kathy

HI KATHY ,I APPRECIATE DECISION OF YOUR MOM NOT TO GO FOR PEG. COULD YOU PLEASE ELABORATE ON WHAT MODIFIED DIET YOU ARE USING ? IT WOULD BE OF GREAT HELP. SOME BRANDS OR INGREDIENTS or any special food  processing !                                             God Bless You and Your Mom.                                                                                    Take Care                                                                                                                Gaurav 

Kathy profile image
Kathy in reply to gauravasaxena

Hi Gaurav,

By "modified" I meant that all her food was pureed and soft to try and reduce the risk of choking and make it easier for her to swallow. We also used a starch based thickener in her drinks. the one we used was called Nautilus but there are several similar products available. If you are able try to get a speech therapist and dietician involved.

Kathy

Can they force you to use a PEG in the USA? If anyone knows for certain please let me know. My first wife died from CJD and couldn't swallow or eat but she was at home under Hospice so doctor's were out of the picture by that time. Hospice just kept her hydrated but no food.

Jimbo

Not where I live at last -- Maryland. Unlikely in any state. In fact, I've been on emotional roller coaster with my husband's NOT getting a PEG. I am struggling with his choice and must admit I've asked everyday, several times a day if he would get one. He is so weak no, his legs don't support him. It's due to not getting enough nutrition. His weight loss is significant. I still wish he would change his mind.

i agree with jill too - i have told my loved ones that i do not want to be kept alive for the sake of it

be brave

love sha

Hi Jimbo,

I don't know about the States, but in the UK you can't be forced to have any type of medical intervention/surgery without your consent.

The problems come if you are not able to make your feelings known or if you are deemed not to "have capacity" to make the decision for yourself. In this case Drs MAY decide to do the procedure if they believe it is in the person's "best interest". Determining capacity is an absolute minefield!! You have to be able to understand a piece of information and retain it. In order to demonstrate this many Drs believe you have to be able to verbalise it. In the later stages of PSP this can be a problem for some :-(

This is why it is so important to make an advanced directive and get your wishes down in writing before it is "too late".

Having said all that I think most Dr's would take into account the opinions of the family/ next of kin before going ahead with the procedure.

Hope that helps

love

Kathy x

Janet has completed an Advance Care Document and understands all the implications although she is no longer able to comunicate normally just the occasional phrase or yes or no. In answer to one comment. No I do not live in U S just next to them in Suffolk. I have complete confidence in the medical team who keep an eye on us at the moment and fully endorse Kathy's comments. Thank you all for your contributions. By the way I do not have ticks, micktick is Michael my first Christian name and Ticker my nickname as I am a watch and clock repairer.

mummybear profile image
mummybear in reply to Micktick

Hi Michael, Glad to hear you have a sense of humor, mind a very good name for a watch/clock repairer. It's good to hear the medical team are looking after you both, it's rare to find doctors that have heard of PSP in Western Australia. I read some PSP article about problems with peg feeds being given to PSP patients whom couldnt make their wishes known in the US, and that would be a worry if any family didn't know your wishes! A medical directive is the way to go for sure, so i hope everyone has one. good luck with your struggle we are all there with you.

Micktick profile image
Micktick in reply to mummybear

Kind words, thank you.

Hi everyone , I know it's different for everyone, but My brother died 4 months ago , he refused the peg on several occasions . I just want ye to know that he was able to eat up to 3 days before he passed away , he was always a big man almost 6ft in height and over 16 stone most of his life and he was at least 14 stone when he died . It would take a long time to feed him, but we didn't mind so long as he could swallow , I hope this might put your minds a ease , Best of luck to all ,ye are in my prayers ..Aine xx. ,

Hi Everyone - first, let me tell you that you cannot be forced to have a PEG in the United States. I do know that when you can no longer swallow - a person can "starve" to death and it won't necessarily be from pnuemonia. Not eating or drinking is very tough for the family -but the body has a way a shutting down in such a way that the person does not feel hunger and it is generally a very natural and peaceful way to pass. I hope this gives you some comfort.

Danielle

dllera profile image
dllera in reply to dllera

BTW - in the United States - if you do not have advanced directives your spouse or power of attorney can make medical decisions on your behalf if you cannot speak or make your wishes known. If you do not have a "do not resesiate" paramedics will perform CPR and take you to the hospital with the goal of saving your life. So far in the US (although I fear it is coming) we do not ration care and it is still an individual right to make all of your own medical decisons and cannot be denied care.

hubetsy profile image
hubetsy in reply to dllera

Thank you for your description of a peaceful passing. I am struggling mightily with my husband's choice.

My sister wrote an advanced directive to have a Peg inserted. I feel she made this decision out of fear of starving because of something she read. I don't feel the same way, but I will follow her wishes unless she decides otherwise. I agree with dllera about what happens when a Peg is not inserted. 

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