The Positives and Negatives of Feeding Tubes in ALS

The Positives and Negatives of Feeding Tubes in ALS

Although there’s no cure for amyotrophic lateral sclerosis, managing it wisely can increase survival and improve patients’ and their families’ quality of life.

One tool for managing it is a feeding tube.

An article in the journal Neurology covered the pluses and minuses of using the tubes in ALS. It is titled The yin and yang of gastrostomy in the management of ALS. Friend or foe?.

At some point, ALS patients develop a condition known as dysphagia, or difficulty swallowing, which leads to weight loss and other problems.

The lack of nutrition that leads to weight loss also degrades muscles. This adds to ALS-related muscle loss from motor neuron death, accelerating patients’ decline.

Doctors have used feeding tubes for years to help manage ALS. The devices improve nutrient delivery to patients who can’t obtain enough orally. Doctors refer to tube feeding as percutaneous endoscopic gastronomy, or PEG, because it involves cutting a small hole in the abdomen to run a tube into the stomach.

The researchers cautioned that tube feeding should come at the right time, or it will actually harm patients.

“An overly aggressive policy for gastrostomy placement in patients with ALS may shorten their survival and increase the risk of death, particularly in patients already having respiratory compromise,” they wrote. “Excessively early placement exposes them to some procedural risk and may decrease quality of life during what should be their best remaining months.”

PEG should be started only when patients are having difficulty swallowing, losing a lot of weight, or are experiencing aspiration — inhaling vomit, blood, or mucus.

Several studies indicate PEG can increase the survival of patients whose disease has become severe. The difficulties such patients face include poor respiratory function and weight loss.

A lot of research has shown that after patients begin to be tube-fed, they gain weight and their quality of life improves. But some studies contradict this.

In recent years, more patients have been going to “radiologically inserted gastrostomy,” the research team noted. “It is less invasive than PEG and appears otherwise equivalent.” It could also be safer “in patients with respiratory dysfunction, as it employs a smaller tube and usually requires less sedation,” they added.

With radiologically inserted gastrostomy, doctors use x-rays to make the feeding-tube hole in the stomach smaller and more precise.

Interestingly, two studies reported that tube feeding led to a faster decline in patients’ condition and increased risk of them dying. One covered 331 patients and the other 481.

Another finding of the two studies was that patients who underwent radiologically inserted gastrostomy procedures had worse survival rates than those who had PEG procedures.

Researchers concluded that there’s no consensus about whether tube feeding is positive or negative. The team said doctors generally agree that the benefits depend on the patient’s condition, when a tube is inserted, and careful management of the insertion process and the tube’s use after the procedure.

7 comments

  1. Charlie says:

    These tubes may prolong life in some pALS. However,only in a parallel universe could a gastric feeding tube be described under the heading of ‘Improved Quality of Life.’ If any doctor disagrees then I suggest they have one fitted themselves.

  2. I normally enjoy reading the articles on this site, because I find them very informative. I found no value in this article at all. Of course the determination of whether a PEG tube is the right step for an ALS patient is an individual decision, nothing written here helps that decision.

  3. Pecas says:

    I am completely flummoxed by this article. I have ALS and had a tube placed two months ago. It increased my quality of life immediately because I was having a terrible time swallowing pills and choke every time I drink liquids. I’m not sure what alternative the study authors think we have when it gets to this point? I still work. I don’t plan to lie in bed and starve to death. So strange.

  4. Carol Mongiello says:

    So what are you implying. I know with terminal cancer patients feeding tubes may prolong a persons life but may not improve their quality of life. As the nutrition may be in fact accelerating the cancer. My son has als and has a feeding tube and has been using the liquid nutrition HOPE. He has been doing well on this. Prior to that he was loosing weight. He is still able to eat some foods by mouth. I do not see that this has caused his disease to accelerate. In fact he has gained weight. So again what are you talking about? Charlie I don’t know what your circumstances are so wishing you the best. Frankie’s Mom.

    • Charlie says:

      Carol, I am not sure I can put it any clearer than in my original post above, but here-goes…
      1) the article says that Feeding Tubes can improve the ‘quality of life’ of an ALS patient. I did not agree and said so.
      2) You appear to agree with me (“I know with terminal cancer patients feeding tubes may prolong a persons life but may not improve their quality of life.”)
      3) I am not implying anything. In fact I am stating categorically that a tube surgically inserted through the wall of the torso as in the article cannot be classed as an ‘improvement’ in any way as far as the patient is concerned.
      4) Feeding tubes are cumbersome invasive and unpleasant methods of symptom management – and again,even where they ‘work,’ they are awful methods in prospect and in actuality.
      5) The article said “Interestingly, two studies reported that tube feeding led to a faster decline in patients’ condition and increased risk of them dying.” More evidence it seems that the ‘improvement’ has conditions attached.

  5. Caretaker says:

    My husband is an ALS patient who just had a PEG inserted three weeks ago at Emory Hospital in Atlanta. Even if he never uses it to get nutrition it makes sure he can continue to receive his meds, like Nudexta, Gabapentin and other pain meds that make his condition bearable. Without the tube he will soon be totally unable to swallow his pills. Huge quality of life issue for him. Whether he will use it to supplement his nutrition remains to be seen. He will decide.

    • Fred Smith says:

      I have been on the PEG for over 4 months and take 7 containers of Isosource a day. I can no longer swallow my meds nor any food or liquid so the button works fine. My ALS or Bulbar Palsy was diagnosed in April of this year.

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