What Will You Do When You Can No Longer Eat? Tube Feeding, IV Nutrition, or Choosing to Do Nothing
Written by: 増田 翼 (Registered Nurse)
“If the world ended tomorrow, what would you want for your last meal?”
Have you ever had a conversation like this?
For me, if the world were ending tomorrow, I would want to enjoy as much sushi as I liked (and the expensive kind I don’t usually get to eat).
But not everyone gets to eat what they love at the end of their life. I don’t mean that we never know when the end will come. I mean that illness and aging can make it impossible to eat the foods we love, and that as the end approaches, the ability to eat by mouth itself can disappear.
When illnesses that take away physical freedom, cancer, dementia and the like make eating by mouth difficult, they also take away one of the joys of living.
Even so, just as a car can’t run without gasoline, humans must take in nutrition and energy to stay alive.
So when someone can no longer eat by mouth, how should they get nutrition? Or is it better to accept that “when you can no longer eat by mouth, life is over” and do nothing? In this column, I’ll talk about these options.
There are three main options when someone can’t eat
When someone can no longer eat by mouth, there are three main options:
Tube feeding
Intravenous (IV) nutrition and infusions
Doing nothing
Let’s look at each in detail.
1. Tube feeding
Tube feeding means passing a tube into the body and delivering liquid nutrition through it. Most people have probably heard the term “gastrostomy” (PEG) at least once.
In a gastrostomy, a small opening is made in the abdomen (just below the pit of the stomach), a tube is passed through it into the stomach, and liquid nutrition or blended food is fed through the tube.
Other forms of tube feeding include the nasogastric tube: a long tube is inserted through a nostril down into the stomach, and nutrition is delivered through it.
Creating a gastrostomy requires a procedure in hospital, but a nasogastric tube is inserted through the nose, so it can be done at home.
I have had a nasogastric tube inserted myself, and the discomfort as the tube passes through the throat is intense. Over time, though, you get used to the sensation.
Pros and cons of gastrostomy
Pros
It uses the stomach and intestines, so nutrition is taken in a physiological way that is gentle on the body
Some formulas can be delivered in a short time
With no tube in the throat, eating by mouth is easier, and it can also be used to top up nutrition that eating by mouth doesn’t provide
Cons
Requires a surgical procedure
Requires feeding several times a day
Prone to skin problems, such as redness or oozing around the opening
Requires regular replacement
Pros and cons of a nasogastric tube
Pros
Can be inserted at home
Like gastrostomy, it is physiological and gentle on the body
Can be removed immediately when no longer needed
Cons
A higher chance of reflux from the stomach than with gastrostomy
Feeding can take a long time
The tube runs through the throat, making it harder to eat
Requires feeding several times a day
Requires regular replacement
2. IV nutrition and infusions
Some of you may have had an IV drip in hospital. For short periods, a needle is inserted into a small vein, for example in the arm, and nutrition is delivered through it. This is called peripheral parenteral nutrition.
Because peripheral parenteral nutrition uses small veins, it cannot deliver large amounts of nutrition.
For long-term use, or when more nutrition is needed, central parenteral nutrition (often called total parenteral nutrition, or TPN) is used. An IV access device called a port is implanted under the skin of the chest, and a tube is run from it into a large vein near the center of the body, allowing high-calorie nutrition to be delivered.
Another method is subcutaneous infusion, in which a fine needle is inserted under the skin of the abdomen or thigh, rather than into a vein, and fluids are infused there.
Pros and cons of peripheral parenteral nutrition
Pros
Can be given at home
Unlike gastrostomy or central parenteral nutrition, it requires no surgical procedure
Cons
Hard to deliver enough nutrition
If the IV leaks, the needle must be reinserted, and the line also needs replacing at short intervals
Over time, it becomes harder to find veins for the IV
Pros and cons of central parenteral nutrition
Pros
Can deliver high-calorie nutrition
Less risk of leaks
IV bags need changing only about once a day
Cons
Requires a surgical procedure in hospital
If an infection develops, the line must be removed in hospital
Pros and cons of subcutaneous infusion
Pros
Because it doesn’t go into a vein, the needle rarely needs to be reinserted again and again
Can be started at home right away
Cons
Provides almost no nutrition (although it can provide some hydration)
3. Doing nothing
The third option is to do nothing.
As mentioned earlier, with progressive illnesses, eating by mouth eventually becomes difficult.
Why would someone choose to do nothing? Gastrostomy and central parenteral nutrition require procedures performed in hospital under anesthesia. Weighing the benefit of receiving nutrition against the downsides of the procedures, some take the view that if the illness cannot be cured, its course should be accepted as natural. Some people choose to do nothing because they honor the values of the person and the family: “I don’t want to go through anything more that hurts,” or “I don’t want them to suffer any more pain.”
What to prioritize
The choice of nutrition method has a major bearing on the rest of a person’s life.
Not long ago, a negative view spread in Japan that “gastrostomy is an evil that prolongs life while ignoring the person’s wishes.” It is true that if a gastrostomy delivers the nutrition the body needs, it will extend life.
But every method has pros and cons, and none can be judged simply as good or bad.
What matters is not only the illness and the care situation, but the wishes of the person and the family: what they have valued in life so far, and what they want to value in the life ahead.
To find the best path rather than a single right answer, families need to talk about each other’s values before anyone loses the ability to eat.
It’s fine to start as casually as asking, “If the world ended tomorrow, what would you eat last?” Just start the conversation. When you can no longer eat, what will you do?
Reference
Chiryo (The Journal of Therapy), Vol. 102, No. 1 (2020), special feature “Decision-Making Support for Eating and Swallowing Disorders” (editor: Makoto Oura; in Japanese)
About the author: 増田 翼 (Registered Nurse)
This article is a contribution from a medical or care professional, re-edited by our editorial team. It provides general information as of the time of writing, and symptoms and circumstances differ from person to person. For specific decisions, please consult your doctor, dentist, pharmacist or another professional.
This is an English translation of a column originally published in Japanese by Next Co., Ltd.
About Next Co., Ltd. We are a Tokyo-based company working in Japan’s senior care and end-of-life planning field. Alongside these expert columns, we publish professional training textbooks and support businesses entering Japan’s eldercare market. More expert columns | Our English textbook | Contact us
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