What are the pros and cons of PEG my husband's neuro would like him to have one placed.

[judy1962]

[Kathy]

Hi Judy,

We haven't got to this stage with Mum yet but I have worked in hospitals for many years and have seen loads of people who have had a PEG fitted, so this is the way I see it. I'm sure others will have different opinions,

PRO's

1. Less chance of aspiration (food in the lungs) therefore less chance of chest infections.

2. All nutritional needs will be met, so if the person has been losing weight they may well start to put it back on.

3. Removes the stress of eating and the fear and distress of choking.

CON's

1.The "feed" takes quite a while to run through so your husband would be hooked up to a machine for long periods. They usually try to run the feed overnight to minimise waking hours spent attached.

2. You lose the "social" aspect of sitting down and eating a meal. Relatives often feel guilty about eating in front of the person with the PEG and tend to eat elsewhere, out of sight.

3. If your husband really enjoys his food he will lose the pleasure of tasting anything. However, some people are not exclusively fed through the PEG and it is used to supplement their main nutrition rather than totally replace it.

4. Insertion of the PEG requires a small surgical procedure with the usual risks that involves. The "wound" site is often prone to infection and can become sore and uncomfortable.

5. The feed is liquid going in so, quite often, what comes out the other end is fairly liquid too!!!

To my mind, there are more cons than pros. I've heard people who say it just prolonging the suffering, I've heard others say how glad they are to have as many days as possible with their loved one. One lady made the decision to have her husband given a PEG and 3 months later said she wished she hadn't. I guess what I'm trying to say is it works for some people and doesn't for others.

You know your husband best. Are you able to discuss HIS wishes with him?

Whatever you decide, I'm sure you will make the right decision for both of you.

Hope that helps

Best wishes to you and your husband

Love

Kathy

[judy1962]

Kathy,

Thank you so much for your detailed answer as it is very helpful and something that I would not get from the physicians. I am so torn about this PEG because when Dave first started failing we had living wills made up and he did not want the PEG. It is 2 years later and things have progressed way too quickly. He is only 58 and he was the picture of health until this disease. His appointment is at the end of this week. I am thinking of postponing this appointment to think more about this. I was able to help him gain back the weight loss that he had over the past month. He is now back to a normal weight, but still down 20 lbs. from when he first got sick. Thank you again and best wishes to your mum and yourself!

Love,

Judy

[Kathy in reply to judy1962]

Dear Judy,

I think you're very wise to get as much information as you can about this. Do you think it's likely that your husband will have changed his mind in the the last 2 years? It is sad that he is so young to have to be making decisions like this. Do you have any family/friends who know your husband well enough to know his wishes that you can discuss this with?

I would ignore any emotive comments about starving him to death if he doesn't have the PEG. The way I see it, if you decide NOT to go ahead with it he can eat what he likes, when he likes. You will have to accept that he is likely to get chest infections but all you can do is try to minimise the risk as much as possible by giving soft moist food, rather than dry crumbly textures and possibly thickening drinks etc.

Just FYI, I have seen people pull a PEG out, which isn't nice. One guy pulled his out 3 times - after the 3rd time his family said "no more" as they felt he was making his wishes known!

As I said before, I'm sure you will decide what's right for your husband.

My love to both of you

BIG HUGS

Kathy x

[judy1962 in reply to Kathy]

Dear Kathy,

Thank you very much and you have been very helpful. My love to you and your Mum.

Judy

[PSPA_JillL]

There is an information sheet in the PSPA carers folder about PEG, if you are a member you can phone or email and have it sent. If you are not a member why not think about joining it is free for UK residents who are living with PSP/CBD or their carers.pspeur.org

It is difficult to consider issues such as this, and it is helpful if you are supported by your husbands health care team, it might be good idea to ask to be refered to the palliative care/ hospice team to support you and your husband.

[judy1962 in reply to PSPA_JillL]

Hi Jill,

We live in the US, do you know if I can join or is it just for UK residents? In the US the guidelines are behind the times and they do not give PSP, CBD or MSA patients hospice because they feel that it is not necessary until these patients minds go completley like a patient with dementia. As we know the in these types movement diseases, the body goes first and it is not until the end that the mind is truly gone. Unfortunately because of this we will not be offered hospice or palliative care until it is too late. My best friends mom just died of MSA and was offered hospice on the very day that she died. Her neurologist is the same doctor that my husband has. Not good but that is what the poor patients in the US have to deal with until someone changes this. Let me know if you know of any other comprehensive and practical information on PEG. I am finding some information on line but I would like some real world situations as the online medical information that I am finding is very frightening. Thank you very much for your help, I am feeling quite overwhelmed with all of these decisions especially since his doctor seems to feel that this will improve my husband's quality of life. My major concern is that my husband may pull out the tube. He pulls out his catheter every night and I have to replace it. Thanks again.

Judy

[Fiona_McL]

Hi Judy,

we found the info sheet from the carers pack to be really useful. My mum was in a nursing home so was able to get a variety of opinions.

What really helped her make up her mind was the neurologist telling her that if she didn't, she'd be starving herself, very slowly. She wasn't ready for that, and got the PEG fitted. She was fed overnight, and had few problems with it, although the few days in hospital were no fun for her.

She'd already lost the ability to enjoy sharing a meal with people and was always afraid of choking- the PEG helped her a lot, particularly in the first 6 months or so.

The PSPA nurses are a great help.

Fiona

[judy1962]

Hi Fiona,

Thanks for your help. Did your mom ever pull out the tube. My husband gets quite disoriented at night and pulls off his catheter all of the time. I can attach his catheter, but I would be quite hesitant with the feeding tube and I have heard that if you do not replace the tube in time it needs to be surgically replaced. I am also wondering if your mom ever had any infections as a result of the tube. It seems as though this was helpful for your mom. How is her mind? Dave's mind is ok during the day but at night he seems to regress, he has halucinations and he thrashes about all night which may be the reason he pulls his catheter off. I have spoken to the PSP nurse at the UPenn where he is in the Davenutide trial and she seems to be against the PEG feeding for Dave but does not say not to get it. I would not be considering the tube is his neuro had not been such an advocate for it. Thanks again!

Judy

[Fiona_McL in reply to judy1962]

Hi Judy,

she prodded about the site where the tube was inserted, and did thrash about at night, but never actually pulled it out. She was luckyenough not to get infection there.

Her mind was generally good, although a bit slow to process at times and she sometimes got delusional and distressed. Her communication got very poor, but even the night before she died she was able to enjoy a bit of banter- smiling and doing thumbs up as we gossiped around the hospital bed

My mum was glad to have had the PEG, and to have had 'extra' time with the grandchildren, but I know it's not for everyone.

best wishes

Fiona

[edmee]

I posted my answer to this on a blog. Edmee

[PSPA_JillL]

If you follow the link on this page pspeur.org/about_us/join_us/

you will find out more about joining, follow the link to email Deborah about membership.

[BrianM]

Hi Judy,

I don't know, but the one person who strongly recommend (or pushed) her husband into getting it now wishes that she did not! Too bad that he died, but I, for one, do not intend to live my life in fear even though I wish the choking would stop...

Brian

[judy1962]

Hi Brian,

When we first got the diagnosis several years ago, we had living wills made up and Dave decided that he did not want any artificial means of survival including a feeding tube when it came time. Now he is not as coherent mentally but he has revealed to me that he wants the feeing tube as he is afraid that he will die without it' He could not verbalize this, I have to guess what he wants, I ask questions and he answers yes or no to my to my questions. I believe that I was a big part of his decision as I was getting very concerned over his weight loss. It is difficult for him to understand the complications that the feeding tube may cause and he just knows that he is having a very difficult time swallowing at the moment. He had lost some weight but I have made numerous changes in his feedings that the dietician and speech therapist have reccomended and he has regained his weight loss. The physician feels that the tube should be placed now while he is still strong. I have postponed the appointment because I am trying to get more informed and our PSP nurses have seen so many cases where the feeding tube was not helpful but harmful to the patient and I am afraid to have it placed. They also believe that it should be reserved for the time when Dave will not be able to swallow at all. The choking can be very scary but he chokes on saliva to and the PEG cant help that choking.

I understand that you will not have the feeding tube. Do you think that you might change your mind? I am not sure why my husband changed his mind but I think that it may have been because I was so concerned about his swallowing and his weight loss and he saw that. For now we are putting it on hold. I am not sure what we will be doing in the future. These things have all come so quickly. I had no idea that things would happen so quickly when we first got the diagnosis. Take care of yourself Brian.

Love,

Judy