Food tubes - Urgent Question

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Dad's (63yrs of age, early onset dementia) taken a turn for the worst, an infection he had when he was living in the old folks home we discovered (after moving him back home) was a nasty chest infection.
Thought we got that sorted last week, when he was put in hospital and had a drain put into his chest and was given super you beaut antibiotics...he was really coming along well...but between yesterday and today, its been found that he has other fluid on his lungs, and basically the speech pathologist has deemed him Nil by mouth as she believes he is swallowing his food into his lungs...and that this will kill him...
Anyways the hospital has given us three options:
1. Stop treatment and he will die probably in a week or so, as he won't be getting any food,fluids and antibiotics;
2. Keep on with the current treatment and he will die within a month or so in their estimation because again he won't be getting much real food;
3. Send him in for an operation (where the risks are high that the anasethetic may kill him because of the current state of his lungs and his brain damage) to insert a tube into his stomach and then he can be continued to be sustained by food.
Dad can't walk or talk, but he chatters and mumbles and looks into your eyes and converses in his own way, so we as the family have decided on option 3 as he doesn't look like he wants to give in, he 'seems' to be able to put up with the ***** this disease deals upon him and seems to want to keep fighting...our only concern is not knowing what the effects of such a food tube are.
So my question is, does anyone know?
1. Are they painful?
2. Could it lead to god awful suffering in the future? I mean other than the god awful suffering that he has had to deal with constantly for the last 3yrs or so?
Some might think that we're crazy for not even considering option 1 and 2, but I have to say in my Dad's case, and its always different for each individual, they just don't seem to be an option..
We have been told that the food tube may not help at all either, as he may still apparently bring the food back up into his lungs...but to see his eyes...we just have to try...?
 

lindaj

Registered User
Jan 15, 2007
30
Nottingham
I was in the same position as you a few months ago and I choose the first option but mum was being hydrated for the first few day but that had to be stopped because she wasn't absorbing the fluid. Your dad is very young compared to my mum who was 77 it wasn't an easy option but I chose that root because mum had no quality of life it was just one chest infection after the other.
Mum lasted 4 days and the ending was very peaceful. Its very difficult for anyone to advice you can only do what you think is best for your dad.

Linda
 

Mameeskye

Registered User
Aug 9, 2007
1,669
56
NZ
When Mum is ill now we are starting to be faced with these choices but never as starkly yet as yours. I think that you know your own relative best and you have to do what you think that they would want. Therefore you have made the best decision.

My thoughts are with you that it all goes well.

Mameeskye
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Thanks for the replies, and yes don't worry we are rather comfortable with our decision...except...not knowing about what inserting a food tube means...appreciate anyone with knowledge on that area replying as well
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Oh dear, Nat, I'm so sorry about your dad. As you say, he's so young to have reached this stage.

It's an awful decision to make. I made it for my mum, and refused the PEG, but my mum was 92, and was refusing to eat, she just wanted to be allowed to die (stroke, not AD). I don't know what I'd have decided in your position, as you say, you know your dad, and every case is different.

You know all the things that may go wrong -- the anaesthetic, the possibility of regurgitation and aspiration, but want to try anyway.

It may work, people can live for years with a PEG, without any problems. The real danger is that the effect of the anaesthetic may make the dementia worse, and you may have more stressful times ahead.

This disease is painful enough, without having decisions like this to make.

I do hope it all goes well for you, Nat. Please let us know.

Love,
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Nat,
What a difficult decision.
The other problem with a PEG as I understand it, is that once it is inserted it cannot be removed; even when dads mental health deteriorates further. I think with dementia, food aspiration and subsequent pneumonia is a common cause of death, the PEG may prevent this and so prolong the final stages.
Sorry, not a pleasant thought, but one that you maybe should be aware of.
Love Helen
 

Cate

Registered User
Jul 2, 2006
1,370
Newport, Gwent
Hi Nat

What a dreadful decision to have to make, but as others have said, only you can know what your dad would want you to decide for him.

In your shoes I think I would be going back to the doctors and asking them your questions, and any others you may think of. Who is going to manage the PEG feeding on a daily basis, I presume the one thing you have to be mindful of is infections.

I hope it all goes well for your dad.
 

TinaT

Registered User
Sep 27, 2006
7,095
Bolton
What a brave, brave family decision. And what a strong, united family you seem to be. Good luck to you all, whatever your decision. I sometimes wonder if we are just given too much choice so that it all becomes unbearable and unmanagable.

I taught a little boy aged 8 who had a PEG feeding tube in his stomach. The family managed it very well although it was only used as a supplementary way of feeding. He was encouraged to eat normal food as well. There was never any suggestion that this could not be removed at a later stage when he was completely eating normal food. Still, what do I know - it could have been a different type of PEG to the one suggested for your dad.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Tina, I don't think it's a question of not being physically able to remove the PEG. The little boy was presumably being encouraged to eat normally, with the aim of removing the PEG.

With an old person who either cannot eat, or who aspirates food, that situation is not likely to improve. The problem then arises that if the general health of the patient deteriorates, and the family then decide to let nature take its course, ethically the doctor cannot remove the PEG, as that would be hastening death. So the final stage may be artificially prolonged, and there is nothing anyone can do about it.

Of course, I don't know if this applies in Australia.
 

1234

Registered User
Sep 21, 2005
43
bradford
yes it is the eyes

Hi Nat knew which option you had chosen before i finished reading your post, your strength must have come from your dad, who still shows the will to livein his lovely eyes, just looked at the photo of your dad and you wearing your wedding dress for him, glad all the family are in agreement, shall be thinking about you all love pam
 

blue sea

Registered User
Aug 24, 2005
270
England
Hi Nat
We chose option 3 for my dad, after discussion with the doctors. His care team were divided as dad's condition made him a borderline case. In the end we said we would go with the decision of the consultant. Dad had had a major stroke, as well as advanced dementia, but still knew me and had some responses. It is a really difficult decision, but as others have said, it is personal to you as a family and you take the decision that seems best at the time, out of love. Dad survived the PEG operation and it did not seem to cause him pain or distress. However he died a week later from pneumonia. I think his end was possible hastened by the operation, but no-one can be sure of this. It was a relief when he died in that his suffering was over but he seemed to want to go on fighting for life right up to the end. I think you have to listen to the doctors, read up on it all and then just go with what seems right for you as a family, as you have done.
Thinking of you and your family.
Blue sea