About Feeding Tubes
As ALS progresses, throat/muscle control over
swallowing commonly become impaired. As it becomes increasingly difficult to swallow,
meal times become longer and longer and choking episodes become more common.
This can result in food or liquids entering into the lungs instead of the
stomach (aspiration), thereby increasing the risk of pneumonia, and in
inadequate intake of liquids and/or calories resulting in dehydration and
weight loss. Additionally, although the patients appetite typically remains
good, the effort involved with eating can consume a tremendous amount of energy
from the patient and caregiver. For patients who tire from the efforts to chew
and swallow food and/or caregivers who spend an excessive amount of time
feeding the patient, tube feeding can result in a significantly improved
quality of life. Not only does it give you more free time for enjoyable
activities or to just relax with one another, it enables the patient to get the
proper nutrition/fluids they could not consume.
From a medical standpoint, a feeding tube is
recommended when the ALS patient is no longer able to ingest sufficient liquids
to prevent dehydration and/or sufficient calories to maintain body weight. A
feeding tube should be suggested by the physician after swallowing tests have
determined the patient can no longer safely eat sufficiently to maintain their
body. A swallowing study is typically performed by X-Ray technicians and
commonly includes video taping the patient swallowing various consistencies of
liquids/foods. If a feeding tube is recommended, it is then the
patient/caregiver's responsibility to make the determination whether or not
they want to have this procedure done in order to maintain life.
The decision to get a feeding tube is a personal
decisio. It should be made by the patient (or their caregiver based on their
knowledge of the patient's wishes) in concert with their physician, and should
be heavily influenced by the patient's quality of life. If the patient no
longer has a will to liv, compounded by overwhelming physical deterioration,
then the choice to die a peaceful death can be honored by not providing fluids
or nutrients through a tube. A normal, healthy body will typically die within
14 days from the lack of liquids and food and someone with a serious illness
can succumb sooner than that. Most medical professionals agree that it is a
very painless choice in dying.
Like any decision though, deciding whether or not to
get a feeding tube should be an informed decision. The ALS patient, their
family and their caregivers should understand what is involved so they know all
the pros and cons of deciding whether or not to proceed with getting a feeding
tube. The following will, hopefully, provide some information on feeding tubes
which will help enable the ALS patient to make an informed decision.
What does a G-tube look like?
There are various different types. The
two main ones are a PEG (Percutaneous Endoscopic Gastrostomy) and button. The
PEG is a length of tubing with a valve at the end which protrudes several
inches from the incision area. Sometime this is put in first until the stoma
site has healed well. It can then be replaced with a button. A button looks
very much like the small valve that is used to inflate a child's beach-ball. It
is made of clear, soft plastic and sits right next to the skin and is flush to
the body. A length of tubing is connected at feeding times.
This depends on each individual. The medical team will decide the best way depending on how old the person is, how good their breathing is and what sort of tube they are going to have. The placement of a feeding tube is a relatively simple procedure. As with any surgery, patients are more likely to experience complications if they are smokers, obese, use alcohol heavily, or use illicit drugs. In addition, some prescription medications may increase risks associated with anesthesia.
The most common procedure for fitting the G-tube is called percutaneous endoscopic gastrostomy (PEG) tube placement. It is typically a short surgical operation that lasts about 20-30 minutes which is usually done with mild sedation given in the vein and a local anesthetic. The doctor will guide an endoscope through your mouth and into your stomach. An endoscope is a long, narrow tube with a camera and light on the end of it. It lets your doctor look into the inside of your stomach showing the surgeon where to make the hole. During the surgery, a hole (called the stoma) about the diameter of a small pencil, is cut in the skin and into the stomach just below the lower ribs. The stomach is then gently attached to the abdominal wall. The G-tube is then fitted into the stoma. It is a special tube held in place by a disc or water filled balloon that has a valve inside allowing food to go in, but nothing to come out.
The
patient is observed in a recovery area for about an hour, then moved to their
hospital room. Depending on their level of health prior to having the PEG
installed, their stay could be 1 to 2 days for observation of acceptance of the
feedings. The stomach and abdomen will usually heal in 5 to 7 days.
Will it hurt?
There
may be some discomfort from gas/air or adjusting to the liquid foods. There will be slight discomfort at the incision site after
the operation but this can be dealt with using ordinary painkillers. Once it
has healed you will hardly feel it is in there.
Will people know that I have a G-tube?
How much time will it take to
care for the G-tube?
Usually G-tubes need very
little maintenance. They need to be kept clean but a bath or shower does most
of this for you.
What is the stoma?
The stoma is the surgical hole into which the G-tube
is placed.
What does a "good" stoma look like?
Ideally, the site should be flat, dry and not tender
or excessively red. If the site is red, oozing profusely or has a foul odor,
you might have an infection. Consult your physician.
How should I clean my stoma?
The first week there is more care than afterwards
since surgery has been performed. Sterile gloves, gauze etc., must be used to
clean the area thoroughly around the wound. The nurses and doctor will instruct
you in this procedure and will usually give you a booklet to take home with
you. The incision will heal but of course remains open since the tube is
through it. Afterwards the incision has healed, daily care of the G-Tube site
is simple. The area around the stoma and under the tube flange should be
cleaned daily with warm tap water and a tissue or gauze. A mild soap can be
used to remove any small crusts. Allow it to dry completely. Some people
carefully use a hair dryer to speed drying. There is no need to use saline
(salt water) or sterile liquids - clean tap water is fine.
What sort of dressing should be used?
Ideally, none. The site thrives on fresh air and a
daily shower or bath.
Will it leak?
Occasionally
the tube may pull away from the abdominal wall resulting in leakage around the
insertion site. Most G-tubes leak a small amount but
this is easily taken care of with a little damp cotton. The fluid that leaks
out from the stomach can irritate the skin around the tube so it is important
to clean any leaks. If skin irritation is noticed apply a little protective cream or a prescription
skin barrier for protection. Normally, the degree of
leakage is very small and it will not be enough to mark or stain clothes. Leakage
may also occur if the stoma site (incision) enlarges in the patient with poor
nutrition A tube that leaks more than a little,
probably needs replacing because the balloon is leaking or it is not the
correct size.
What is proud flesh?
Occasionally the development of what is referred to as granulation
tissue or "proud flesh" will occur. This is basically skin that grows
around and sticks out from the stoma site. The use of hydrogen peroxide to
clean the stoma site can lead to the growth of granulation tissue. Treatment is
simple and painless. When it becomes bothersome, you can get rid of most of it
by cauterizing the flesh with silver nitrate. This devitilizes or burns away
the tissue and in a few days, it sloughs off. Your Gastroenterologist
prescribes the silver nitrate in the form of a caustic pencil or applicator
sticks that look like long matchsticks.
What other complications might there be?
Occasionally, the skin around the stoma can become sore or
infected, or it can get a bit hardened. It is therefore important to look at
the stoma when cleaning it and let your nurse/doctor look at it if you are
concerned. Stomach ache, bloating or diarrhoea can also occur if too much food
is put into the stomach too quickly. This may happen if the stomach is not used
to large volumes. A feeding regime should be discussed with your doctor or a
dietician so that tolerance can be gradually built up.
Does the feeding tube ever need to be
replaced?
The feeding tube does not last a life time. They typically have a life span of about 6-12 months so it is important to understand they may have to have it pulled out and a new one inserted. If there is substantial drainage but flushing can be easily done, there is a good possibility a replacement tube is needed.
What
happens if the tube comes out?
This is unlikely as the tube is secured either by a
little water filled balloon or a small plastic disc. As the hole is only a
fraction of this size, the tube cannot pull out until the balloon is deflated,
which is only normally done to renew the tube. If the tube ever does come out -
don't panic. Place a clean dry towel over the stoma to absorb drainage. If there is an extra on
hand, replacement of a button can often be done at home if the caregiver has
received training. Otherwise calling a doctor or visiting the hospital
emergency room is in order. In either case, it is a good idea to have an extra tube on hand. Remember though, the key to
quick and easy replacement of a button of any variety is speed! It only takes a
few short hours for the stoma to close up. If this happens, surgery may be
required to reopen the stoma.
What if the tube becomes plugged?
This is most often caused by the build up of formula
residual in the lumen (internal space or opening that exists within the
gastrostomy tube). Tube blockage may be prevented with the routine practice of
flushing the tube after each use. The tube should be flushed at least once
daily. Although water is good, coke or other carbonated beverages are even
better. If blockage occurs the tube should be irrigated using a large bulbed
syringe. Be careful to avoid excesive force while irrigating because the tube
could rupture. Milking the tube may help dislodge the obstruction. Should these
attempts to remove the obstruction fail, notify the physician immediately.
What about oral hygiene?
Good mouth care is imperative in preventing
problems, especially with patients who are provided with total nutritional
support through the PEG tube. Daily brushing of the patient's teeth, gums and
tongue should be done. Mouthwash may be used with patients who retain a gag
reflex. The patient's lips should be moistened with water and, if necessary,
lubricated with petroleum jelly to prevent cracking.
What kind of food is fed through the g-tube?
Commerical food: It is usually
recommended that a commercially available prepared
(canned) formula and water for hydration be fed
through the tube. This will provide a balanced diet
including all the essential vitamins and minerals needed. Some of these
formulas contain fibre so that regular bowel movement can be maintained even if
you are unable to eat fruit, vegetables and other high fibre foods. It
is important to understand that nutrition is a very critical to the continued
well being of the ALS patient. Because of the need to make commercial brands of
food supplements taste good to the public, they are high in fat and sugar content.
Over a prolonged period of time excessive fat and sugar are not good for the
human body. If the patient is getting the bulk or all of their nutrition from
supplements, it is suggested that you work with a dietitian to find a high
content formula. The best formula is likely one that is not commercially
available through retail outlets. The formula comes commercially prepared or in
powder form which requires dilution with water. Common brands, typically with or without fibers, include
Ensure, Jevity, NuBasics, Boost, and Isocal among others. Most come in 8 oz.
cans and contain 250 calories.
Table Food: Table foods may be blenderized according to
instructions from the physician. Many people use homemade formulas prepared
from cooked, blenderized foods but caution should be used to prevent clogging
the tube in the stoma itself. Most tubes are roughly the size of a straw in
diameter. Therefore food would have to be liquidized to prevent clogging the
tube. Old foods left in tubing and other apparatus can lead to infection,
therefore adequate cleaning is necessary. Specific
advice with respect to the type of food and the quantity required should be
provided by your doctor or a dietician.
How much formula should be given?
This is determined by your medical advisors and is
dependent on many factors. The physician will advise the patient/family on the
type of food, methods of feeding, frequency and rates.
How do you take medications?
Medications may be administered through the tube
utilizing the bolus feeding method. The physician or pharmacist should be asked
for liquid medication where possible verses pills or capsules. If liquid
medication isn't possible, certain tablets and pills may be dissolved in 30cc
to 50cc's of water. Formula, juice or milk may be used if the medication does
not dissolve in water. Highly viscous liquids (sticky, gummy, gelatinous liquid
like CO-Q10) should be diluted with water prior to administration. It is
recommended that a physician or pharmacist be consulted for questions regarding
medications and/or the administration of medications, as certain medications
should NOT be crushed or dissolved. Following the administration of any
medication, the tube must be flushed with 30cc to 50cc of water. DO NOT give
bulk laxatives through the tube without consulting with the physician first as
some laxatives may obstruct the PEG tube.
Will I use the g-tube at normal mealtimes?
The g-tube can be used at anytime that suits the individual. The
feed can be given by attaching a syringe to the tube and pouring in the feed or
by using an electric pump, so that feeds can be given without the person or
helper needing to do anything during the meal. Some people choose to stick to
regular mealtimes, while others use a pump and continuous feed to allow feeding
to be done mainly at night. Some families find that it is nice to sit down to
eat together even though one of them is getting their main meal through the
g-tube. The person can sometimes be having a light snack at the same time or
just a drink. Each person's routine is individual and is decided on with all
their needs in mind.
Can I eat some normal food or drink by mouth?
It depends on why the tube was inserted. If it was because of slow
mealtimes or poor weight gain only, it is OK to continue eating and drinking as
usual. In this way your mealtimes can be as long or short as you wish as you
know you can top up enough calories via the tube. Some people use the g-tube
mainly as "insurance" so that the person can always be sure of
getting food and drink even if they don't feel like eating by mouth.
However, if the reason for having the tube is that the person has
swallowing problems and aspirates on food or drinks, it is important to have
advice on what is safe to take by mouth. The team may recommend that only
certain amounts or types of food or drink are safe by mouth. Sometimes it is
the safest option to stop taking food by mouth altogether. This is not a
forever decision and the swallowing will be monitored so alterations can be
made as things change.
What if I am thirsty?
In some cases it is OK to drink normally. If the team has said
that you cannot drink by mouth then fluids added via the g-tube will reduce
thirst.
What will it feel like while I'm being fed?
Most people don't notice anything at all. If an attempt is made to
feed a person too quickly they will soon complain of feeling sick, just as they
would if they ate too much, too quickly. If this happens, then the rate of
feeding is easily reduced or stopped.
Will I still feel hungry, and then full after a feed?
Yes. The stomach will still fill and empty in the normal way,
giving the usual sensations of hunger and satisfaction.
How should food or formula be handled?
The caregiver should thoroughly wash their hands
with soap and water before preparing formula/food and having contact with the
patient. Formula should be given at room temperature (too hot or cold would
make patient uncomfortable). Unused formula and blenderized foods should be
refrigerated. Refrigerated formula and blenderized food should be warmed to
room temperature over a 30 minute period before feeding. NEVER heat the
solution as this could increase the growth of bacteria. In hotter climates, ice
may be placed in the outside pocket of the full canister or bag for overnight
feeding, but be conscious of the discomfort caused to the patient, as some
people with buttons find cold fluid going into their stomach quite
uncomfortable.
In what position should the patient be fed?
The patient should be fed in an upright position (at least 30 degrees) and remain in an upright position for 30 to 60 minutes following the feeding. This minimizes the possibility of aspiration (inaling food into the lungs) and its inherent complications (pneumonia). Overdistentio, where the abdomen becomes superinflated, should be avoided by careful attention to the rate of feeding flow and the development of abdominal bloating. The doctor will recommend the measurement of feeding and the flow to be used.
What is Bolous Feeding?
Bolous feeding is where the food is poured into the
tube slowly verses by machine. Bolous feeding allows you more freedom in that
you can give feedings anywhere, which is nice when you leave the house. Bolous
feeding allows for rapid feeding of formula over a relatively short period of
time. Formula may be instilled using a bulbed or piston syringe or through the
use of gravity flow. The feeding usually consists of no more than 250 cc's to
500 cc's per feeding and is given to the patient every 4 to 6 hours. Never
FORCE fluids through the PEG tube. Infuse the formula slowly and carefully to
prevent abdominal cramping, nausea and vomiting, gastric distension (inflated
stomach) or diarrhea. If the formula is not infused (poured) slowly, the
patient is placed at a high risk for aspiration (fluid into the lungs) and the
complications of pneumonia.
What is Continuous Feeding?
This method is preferable for many patients because
it allows for better regulation of the amount and rate of food. The feeding
pump (a machine) is set up and the tubing connected to the PEG tube. The
formula is infused over the prescribed period of time into the patient. Using a
feeding pump to control the rate is normally better for digestion and causes
less problems. Typically the slower the rate of intake the better the
tolerance. The risk for aspiration is also decreased because less formula is
given during the prolonged period of infusion.
What is the purpose of the alarm on the pump?
The alarm may sound to let you know the pump is
running on the battery instead of the power point. It also warns of a blockage
in the flow (check to make sure the clamp and roller brake are off), a kink in
the tube (check under the patient, also the tube between the canister and where
it enters the pump), and that the canister is empty of formula.
How do I clean the equipment?
After each feeding, flush the tubing with lukewarm
water to clear the tubing and wash away any particles that might clog the tube.
Remember, don't flush the tubing with chilled water. If you use a canister type
apparatus to hold the formula, scrub the inside with a brush and warm sudsy
water. Plastic bags such as those for the Kangaroo pump (and similar pumps) are
designed to be used for 24 hours then thrown away. Some people clean them
thoroughly then use them for another 24 hours but caution must be exercised
when doing this, as the threat of infection exists. Flushing the tubing with
boiling water helps get rid of stubborn particles (after the tubing is removed
from the patient!). Some people advocate the use of a carbonated drink such as
Coca Cola to clean the tubing. Running a small amount through the tubing may
help remove crusted formula.
What can be done about abdominal gas?
Trapping of gas in the stomach is sometimes a side
effect of tube feeding. Massaging of the abdomen can sometimes help, as can
bending the knees up to the chest. Also try rolling onto one side or other to
allow the gas to be dispersed. Should the patient experience bloating prior to
or following any feeding, the patient's stomach and intestinal tract should be
decompressed. Decompression is easily accomplished by removing the feeding
adapter cap from the tube and allowing the PEG tube to be open to air. Encouraging
the patient to cough will expedite the removal of excessive air. It is a good
idea to put the bolous tube into the PEG before the patient cough's or burps to
prevent the contents from splattering out all over.
The care of the tube and the feeding sound like a
lot of work, but it really isn't. At first you swear you will never remember
all of the steps necessary for each procedure!! It is a good idea to take notes
and develop a checklist to use for the first week or so but you will find that
you will quickly be able to do it from memory.