Feeding tube designer sees need for rules

[Algorem]

...The pediatric surgeon never thought the life-saving device he inserted for the first time in a 4-month-old boy at Rainbow Babies & Children's Hospital would emerge years later as the focal point in a contentious right-to-die case that has involved both Congress and President Bush....
Gauderer has no desire to jump into the politically charged Schiavo debate, contending that each situation is different. But institutions need guidelines, he said.

"There is a real danger of abuse of the use of this technology," Gauderer said. "I think that in many cases, the placement of the tube is probably not fully justified."

For example, "If the chances of survival is a week or a month, I don't think it's justified," said Gauderer, now the chief of surgery at Greenville Children's Hospital in South Carolina.
http://www.cleveland.com/news/plaindealer/index.ssf?/base/news/1111660534151111.xml

[truthisfreedom]

1. and if it makes money for the medical community for 15 years or more...

leave it in and pump it full of food every day until the economic advantage is exhausted by death?

[dbt]

2. For real! Murkins need to get a clue about The Tube.

Let them observe a parent or other close relative live with one for about a year. Let them watch that canned yellow goo be injected into the stomach of their loved one and let them smell the cheesy breath that results. Let them listen to the wise old Nurse who says that patients who get The Tube are good for about another year, before complications of it or something else take them out anyway.

It's all so simple on the Alleged News: put in a Tube, save a life. Let the Right-To-Life crowd live around The Tube for a year or so. Then, let them speak from experience. Shoot, they'll be ripping the duct tape off their faces so that they may denounce a Tool of Satan.

Let them walk a mile in my Mother's feeding tube.

[Ilsa]

5. You forgot all about the absolutely disgusting odor

from changing adult disposable underwear filled with humongous solid human waste. God I can gag just thinking about it. This scene is one huge reason alot of people choose to end their lives with a little dignity instead of staying in that condition for another decade.

Let Tom DeLay and the other Repukes and the religious freaks take turns cleaning her up for ten years, then they might be in shape to make some judgments about her quality of life.

[noonwitch]

8. Not the best of arguments

I worked with a developmentally disabled child who was about 10 and wore diapers. I had to change them occasionally, and they were nasty and stinky, especially if she had the flu or something. I would never say that that would be a reason to end her life, she brought so much love and joy to the people around her. My grandmother is in a nursing home, but is conscious, aware and able to communicate, eat, and even read the paper and watch tv, but has occasional accidents. Considering grandpa pays the nursing home 6 grand a month, they can clean up after her. It's a good nursing home, however (it should be for that money) and they try to prevent the accidents by frequently helping her to the bathroom.

The cost of Terri Schiavo's care should never be part of this argument, nor how much work is involved. The argument should stick to medical facts and what her wishes were.

[Ilsa]

11. I'm not saying it is part of the argument

to end her life. I am saying it is part of the continuing care, and as such it is part of the cost of maintaining life with tube feedings for someone who isn't able to care for themselves.

I do more than work with a developmentally disabled child: I have one. My son is autistic and I changed his pooped pants every day, sometimes four times a day (he pooped alot), until he was six and half years old, no end in sight. When he went on Strattera, he was able to attend to his own needs and focus better and take care of his toileting. Let me tell you, the impact on my life was tremendous. It felt like someone had given me uppers for the next year, not having to deal with that one thing every day.

People think that taking care of someone like TS is a piece of cake until they have to do it, day in, day out. I've even heard them comment about how easy the tube feedings are. It is very difficult, nasty work. As a nurse, I have also taken care of patients like TS and geriatric patients on their way to hospice. Let me tell you, it is a rare event when the family members stay in the room to help clean the shit up. They are tired of it too.

[deek]

12. tube feedings

Are a piece of cake compared to trying to feed someone who can not swallow properly (gag, choke). I've done it for 20 years.

Have changed diapers for 21 years. Not that big of a deal, really. It's all in perspective.

[Ilsa]

14. All in perspective?

Then why do people leave it up to the nurses to do it? Why did the Schiavo family bring her back to hospice after two weeks explaining that they couldn't handle it?

[deek]

18. There's more to "total care"

than tube feedings and diaper changes.

Physical therapy, transfering, using specialized equipment to prevent bone density loss, extra laundry/cleaning, coordinating appointments with drs, specialists, equipment people, supplies, advocating for services and equipment, reminding "professionals" what they are supposed to be doing for her,

Plus providing nonmedical attention and "a life".

This is on top of everything it takes to run a typical household.

It's exhausting.

They obviously didn't have the necc supports and services for keeping her at home. Florida is notorious for not being disabled-friendly.

The Olmstead Act would have Medicare $ "follow the patient" so that they can realistic live in the community instead of an institution. Medicare will pay lots of money to a nursing home to care for someone, but little if that person lives at home. Doesn't make much sense, but true.

It's not implemented very well.

http://www.cms.hhs.gov/olmstead/

[TahitiNut]

3. And how much does each day's "meals" cost??

$1,000? $2,000? $5,000? I don't think we're talking "Happy Meals" here.

[Warpy]

4. Ensure is one product used for tube feedings

and you can price it at your local Walgreen's. Schiavo is probably maintained on 5-7 cans of it a day.

However, the cost of tube feeding is more than the cost of the flavored goo that goes into the tube. It's also the cost of pump rental, daily changes of bags and tubing, daily observation of the tube feeding site, dressings as needed, and knowing how to set the whole business up.

[TahitiNut]

7. As someone who buys Ensure/Boost/Fortify for my mother ...

... who's semi-disabled, and who's had more experience than he ever wanted with the billing from the hospital and nursing home for providing such nourishment, I can assure you that the billing bears virtually no correlation to the price (about $1/can, at best, for the high calorie) of such substances at Walgreens, Wegmans, CVS, Kroger, or elsewhere.

(The goo that's intubated isn't really the same thing, either. Flavoring, for example, isn't used. Why would it be?)

[deek]

13. It's probably Ensure--not goo.

http://www.ross.com/productHandbook/default.asp

My daughter's been on Ensure with Fiber for 20 years. No stinky breath from it. The breath problem usually occurs during illness.

Medical supply companies charge approx $1/can. You are correct that Terri was probably on 5-7 cans/day.

Terri was not on a feeding pump. She was being gravity fed, probably 3-4 times a day. It's a similar set up to a NONpump IV situation, where the bag is held higher than the stoma, so that the nutrition drips in gradually.

[politicat]

21. Ensure costs 8.75 for a 6 pack that provides 1-2 days nourishment

Each bottle runs about 300 calories. A person who has no caloric needs beyond maintenance could survive on 3 bottles a day.

Most people need between 1200 and 1500 to maintain resting metabolism.

[napi21]

6. I'd also like to ask this Dr. what the effect is on a patient when

they continue to insert and remove a feeding tube.

A few days ago, I read something about the feeding tube being blocked off (not actually removed). We are getting so much partial, and some flat out wrong information in this insane case, I don't think anyone can make a fair judgement!

[ElectroPrincess]

9. Yeah, and as one lies wasting away from terminal cancer ...

Make sure that those daily tube feedings of "Ensure" come right on time so this person can have the "full experience" of the metastasized cancer tearing apart every body system one by one. Yeah, forget that they don't do that (put in a feeding tube of patients dying of cancer who refuse nourishment) ... NO! Forget also that even Devout Catholics who die of cancer are not forced fed via tube in hospices.

Yeah, let's totally change the law ... everybody gets a feeding tube! Terminal cancer patients (definitely my fellow Catholics), swiss cheese dead cerebral cortex patients (Terry Schiavo)... yes, everyone can waste away to please the Neo-Con Fundamentalists.

I'm very disappointed and saddened that The Vatican had to *specifically* jump into the mix. The Nuns who work with the terminally ill consider "feeding tubes" extra-ordinary measures. If The Vatican does NOT consider feeding tubes extra-ordinary they MUST be consistent and insist on this for ALL PEOPLE. Ya think? No, I think they are being selective.

Let the *legal* guardian's wishes and the courts allow this poor woman to die in peace.

Damn those self-righteous fundamentalists. If justice was served they'd be forced to see a loved one waste away with cancer ... but that OLD feeding tube would be intact. Hypocrites! :P

[NewYorkerfromMass]

10. "We cannot hold people hostage just because there are technologies"

Good quote from the bioethicist.

Dr. Stephen Post, a bioethicist at Case Western Reserve University who studies longevity, said the PEG procedure isn't appropriate for patients like Schiavo, who have no cognitive function. "We cannot hold people hostage just because there are technologies around."

Sounds like they side with the 21 previous legal rulings here.

[daleo]

15. That must be a long tube, or she is quite incapacitated.

If she has any sort of mobility at all, it seems to me that tube would be coming out a lot. It is hard to keep an IV tube in someone with dementia, without physically restraining them, for example.

If this is not a problem, it would be another sign to me that her mental functions are extremely primitive.

[deek]

16. see the little balloon at the end?

http://rpdcon40.ross.com/mn/Ross+MN+Nutritional+Products.nsf/web_Ross.com_XML/23445847399DA32F8525648B00622222?OpenDocument

That prevents the tube from coming out. The triangular piece is on the outside of the body, the balloon inside the stomach wall.

Can't find the diagram they've had on Yahoo lately........

[daleo]

17. Yike. That sounds unpleasant.

Not that she notices, I suppose.

[deek]

19. not unpleasant

The balloon is deflated when the tube is inserted. It is then filled with water through a little portal to inflate it.

I change my daughter's once a month. Takes 5 minutes, tops.

[daleo]

20. Is your daughter unable to swallow, but mentally alert?

I certainly don't have a problem with the idea of a feeding tube if the person has some kind of mental functioning and desires this treatment. My mom went through a period of difficulty swallowing, so I have some limited experience with the condition. Fortunately a good deal of her dementia was due to dehydration and infection, and she has gotten much better.

[roseBudd]

26. Felines get PEG tubes for hepatic lipidosis, the cure if it works is

feeding 1-3 cans of Hills A/D per day and it can take as long as 6 weeks. The cat either dies because the liver does not regenerate or they start eating on their own again. The PEG tube is not permanent.

[Valerie5555]

29. Re: Kitties and PEG Tubes I remembered reading on a Feline CRF website

that if "poor old Tabby" or "poor old Rover" had the bad luck of having their kidneys betray them, they usually would need a feeding tube to help them eat in the wake of the nausea that overtook them as the poisons built up in their body. I wonder if the vet would also administer the nausea meds through the tube as well.

I wonder if anyone could also believe that Pet Ag created these special "senior pet" foods that a vet could even administer to "mature" animals through feeding tubes or "Catsure" and "Dogsure."


http://www.petag.com


By the way Pet Ag also makes "infant formulas" for newborn and weanling kittens and puppies.

[roseBudd]

30. CRF cats get Ringers and some owners opt to adopt a transplant cat...

to "donate" a kidney to the CRF cat.

I cannot knock the critical care foods, an animal who is sick or injured has vastly different metabolic needs and will catabolize lean muscle mass. If I was sick I might try Hill's A/D with some Pedialyte.

[Algorem]

22. delete,wrong thread

[Moderator]

23. kick to combine

[cal04]

24. Doctors Who Developed Feeding Tube Technique

Doctors Who Developed Feeding Tube Technique Didn't Envision Schiavo Dilemma

The doctors who created the current technique for inserting feeding tubes into patients said the procedure has gone far beyond its original purpose of helping infants and children who couldn't swallow. Insertion of feeding tubes required major surgery until Dr. Jeffrey Ponsky and Dr. Michael Gauderer developed their technique in 1979. Today, it's used more than 250,000 times a year and has become an integral part of end-of-life care.

Ponsky said he and Gauderer never imagined the procedure would lead to a "massive ethical dilemma" such as the one involving Terri Schiavo, the brain-damaged Florida woman whose care has become the subject of a protracted legal battle. Too often, Ponsky said, the tubes are too often used in patients with no potential for recovery. "Once they're in, it's so emotionally difficult to take it out and let someone die," said Ponsky, who heads the surgery department at Case Western Reserve University.

Still, Ponsky believes that Schiavo should remain connected to a feeding tube if her family is willing to care for her. The tube was removed March 18 on a judge's order that agreed with Schiavo's husband, Michael, who has said she has no hope for recovery and wouldn't want to be kept alive artificially. Her parents believe she could improve. Doctors have said she would probably die within a week or two of the tube being pulled.

Gauderer, director of surgery at Greenville Children's Hospital in South Carolina, said it wouldn't be appropriate for him to give an opinion on the Schiavo case, but he believes the government shouldn't intervene. "This is something that needs to be decided at the family level," he said. Gauderer and Ponsky first performed their technique - percutaneous endoscopic gastrostomy, or PEG - in 1979 on a 4-month-old boy at Rainbow Babies & Children's Hospital in Cleveland. They inserted a needle into the baby's stomach and passed a thread through that was pulled out the mouth by an endoscope. A feeding tube was attached to the thread then drawn through the throat, into the stomach and pulled out through the belly.



http://ap.tbo.com/ap/breaking/MGBFRHTIR6E.html

[kikiek]

25. Same with other life supports available. It is very useful in many

cases I believe because function can return after a stroke or other assault. In her case it didn't. That is where it gets hard. I do home hospice and one of our catholic deacons said it is easy you just don't put a feeding tube in. Well it isn't so black and white. A case in point recently where someone asked me about getting her mother onto hospice because she had suffered a stroke. She wasn't swallowing, and were wrestling with placing a feeding tube. I told her I personally would because people do regain function in many cases. She did and her mother is fine now with minimum residual effects. In my opinion I would not do to any family member what Terri's parents are doing. They tried very aggressive medical interventions for years and her brain damage has not improved. She is still vegetative. The religious people they need around them are not the ones they have. They need support and reassurance that letting her go is a gift they can give to their daughter. They have done all they could. Keeping her here is their desire not hers. She will die irregardless one day. Maybe soon even. The body will shut down and won't absorb the feeding or fluid they put in. Then they vomit and it goes into their lungs. Aspiration pneumonia is not a nice thing to see people die from.

[FlaGranny]

27. This brings back many memories.

My mom died in hospice 3-1/2 years ago. They COULD have kept her alive longer with a feeding tube AND blood transfusions. I was the one who had to make the decision not to insert a feeding tube and to let her go. I know there are many others right now who have had to do the same thing and who are feeling the pain I'm feeling right now over this situation. The fundamentalists and the Bushes are despicable.

[kikiek]

28. I bet this is particularly hard for people like you. It is so personal.