TUBE FEEDING

Alice Martin

Joyce Fox, MD

Barbara Wedehase, MSW, CGC

“Tube feeding” is the method used to feed children and adults when they cannot receive adequate nutrition by mouth. It is also called enteral (by way of the intestine or gastrointestinal tract) nutrition. Many individuals with MPS/ML have severe neurological problems in the late stages of their disease, resulting in increasing problems with feeding. As chewing and swallowing become more of a problem, the time required by the caregiver for feeding can become very prolonged. Enteral nutrition can allow adequate nutrition to prevent weight loss and to improve the quality of life for the individual with MPS or ML and for the caregivers.

The decision to change to enteral nutrition is a difficult one and should be made only after consultation with the pediatrician, geneticist, gastroenterologist and nutritionist. Monitoring the individual’s intake of food, weight gain or loss, choking and gagging, episodes of pneumonia, and time required for feedings helps provides important information to the professionals assessing the need for enteral nutrition. Choking and gagging can cause the individual to aspirate liquids and food into the lungs, resulting in pneumonia, which can be life threatening.

Enteral nutrition can be obtained through either a gastrostomy tube (G-tube) or a jejunostomy tube (J-tube). A G-tube goes into the stomach through a surgical opening in the abdominal wall. A special kind of G-tube tube may be inserted by means of an endoscopic procedure and is called a percutaneous endoscopic gastrostomy (PEG) tube. A J-tube is usually surgically placed through the abdominal wall into the part of the small intestine called the jejunum. Each tube is a flexible (usually silicone) catheter that remains in place at all times and is clamped between feedings to prevent leakage of stomach contents. G-tube feeding can be done at regular mealtimes, called “bolus feeding”, or given slowly over a period of several hours using the “gravity or drip method” or “pump controlled method.” There are advantages and disadvantages to both methods of feeding, and many factors need to be considered in deciding which schedule to use. Feedings done through J-tubes are continuously infused because the small intestine is pressure sensitive.

The surgical opening for the G-tube or J-tube is called a stoma. The stoma can be slow to heal after surgery. Proper care of the stoma site is very important to avoid infection or irritation from gastrointestinal secretions. The area should be kept covered with a dressing and changed as often as needed to keep dry. The skin around the stoma should stay snug around the tube. Swimming in lakes or ponds should be prohibited because of the possible bacterial contamination from such an environment.

A G-tube is anchored inside the stomach by a small balloon at the tip of the tube. The balloon can deteriorate and deflate and the tube can fall out. Your doctor will provide you with a replacement tube and instructions on how to insert it. The J-tube can only be reinserted by a physician, so an immediate call to the individual’s doctor is necessary if the J-tube falls out. Also, these tubes can become clogged. Prepare for this by discussing with your doctor appropriate methods to unclog them in advance. The Mic-key low-profile gastrostomy feeding tube/kit is a skin level device to replace the gastronomy tube. Because this device is level with the skin it is less likely to be pulled out and can easily be covered by your child’s clothes. A special connector allows the G- tube to be removed between feedings.

After deciding to insert a feeding tube, the doctor will perform X-rays of the gastrointestinal tract to help determine if a standard G-tube or PEG tube is indicated. An individual being considered for tube feeding should be evaluated for gastroesophageal reflux disease (GERD) because tube placement may worsen existing GERD and a J-tube may be a better choice. A J-tube may also be an option if there is very poor motility (spontaneous movement) of the stomach. Because of special concerns regarding anesthesia in MPS patients, prior consultation with an anesthesiologist is essential.

The optimal tube feeding schedule will enable the individual to maintain adequate weight, tolerate the tube feedings comfortably, and be fed at convenient times. Caregivers should have contact with a nutritionist to regularly discuss the individual’s feeding needs. For most individuals, regular enteral solutions such as Pediasure, Resource, or Kindercal are sufficient to fill their needs. The addition of fiber to their formula may help with the chronic diarrhea that is common in MPS/ML. The formulas are generally tolerated with little difficulty.

Good positioning during feedings is critical in successful enteral nutrition. If the individual is not positioned well, he or she may have trouble receiving food through the tube or trouble breathing properly. The individual should not be sitting slumped over, as this can put too much pressure on the stomach. If the individual has difficulty in maintaining an upright position, specialized equipment and supports are available to assist in maintaining support positions.

When feeding difficulties begin in the individual with MPS/ML, it is important to begin monitoring his/her food intake and weight. This will help to determine if another method of feeding needs to be considered. The decision to switch to enteral nutrition is not an easy one to make, but many individuals will thrive after the placement of their G-tube or J-tube. Difficulties that may be encountered are best dealt with by the medical team in charge of the individual’s medical care. Continued contact with them is essential for successful enteral feeding.

Question submitted on 02/27/04 by minniewu to Marcia Nahikian-Nelms:

Hi Marcia-
I have 2 questions about jejunostomy tube feeding. Hope you
can help.
1)When feeding a patient on J-tube feedings, is there a
maximum rate that should not be surpassed?
2) Is non-elemental formula okay for a J-tube feeding?
(i.e. in house standard,isotonic fiber formula)
Thanks in advance! Minnie

Answer provided on 03/06/04:

Thanks for your questions.  First, regarding rate - I
think the most important key for tolerance in rate is not
advancing too quickly - I did a quick literature search
regarding research on rate for jejunostomy feedings and
didnt find specific limitations that have been
established.  From a practitioner's viewpoint, I have
found that patients generally can tolerate 100-125cc/hr if
we have worked hard assure tolerance before advancing.
Regarding your second question - yes you can feed a
standard isotonic formula via a jejunostomy.  The jejunum
generally accomodates adaptation for digestion and
absorption...one issue though is the lumen size of the
jejunostomy tube.  You need to be sure that the viscosity
of the formula is not such that will clog the tube that is
being used.
One article you might want to look at is: Nutritional
Response of Patients in an Intensive Care Unit to an
Elemental Formula vs A Standard enteral Formula
(Journal of the American Dietetic Association
March 1998 • Volume 98 • Number 3 • p335 to p336
J. Eileen Dietscher, MS, RDa*, Charles J. Foulks, MDa,
Randall W. Smith, MDb )It is several years old but answers
some of your questions.  Another excellent resource is:
The Science and Practice of Nutrition Support: A Case-
Based Core Curriculum which is an ASPEN publication.  Hope
this helps.  Marcia Nahikian-Nelms, PhD,RD,LD

Mounting Evidence Shows No Benefit to Tube Feeding for Many Terminally Ill Jane Koppelman

While more than one-third of all nursing home residents with advanced dementia have feeding tubes, a growing number of studies show that, for this and certain other groups of terminally ill, feeding tubes do not lengthen life or improve functioning, and may increase the risks of infection.

"The data are simply that it doesn't work. Tube feeding is not in that category of decisions where you have to decide whether the discomfort is worth the benefits," said Tom Finucane, M.D., professor of geriatric medicine at Johns Hopkins Bayview Medical Center in Baltimore. Finucane's research looks at patients with advanced dementia, who often in this stage of their illness lose interest in or resist food, and have problems chewing and swallowing. Other studies looking at tube-fed patients who are terminally ill and wasting from cancer and AIDS show a similar lack of benefits.

Medical Evidence

Finucane and colleague Colleen Christmas, M.D., described findings in a recent Last Acts teleconference on the issue. They had reviewed dozens of studies done between 1996 and 1999 that examined whether tube feeding in patients with advanced dementia prevented aspiration pneumonia, prolonged life, improved functioning, prevented risk of bed sores and infections, and provided comfort. The answer they repeatedly found on all fronts was "no."

For many, the evidence on survival may seem counterintuitive. In the absence of tube feeding, "patients with advanced dementia eat very little, but they eat," said Finucane. "Many can survive for a very long time on very little nutrition." How? These patients are extremely inactive, and therefore burn very few calories. In addition, they often have little muscle and burn calories at a very slow rate. In effect, explained Finucane, the extra calories ingested through tube feeding are worthless.

Increased food intake, whether through the mouth or by tube, is also lost on patients who are wasting due to advanced cancer or AIDS. "No matter how much you feed them, they still lose weight and ultimately die," Susan Mitchell, M.D., a Harvard Medical School expert on tube feeding, noted in a separate interview. Agents in their blood are breaking down muscle mass that is essential to burn the body’s calories. "Their metabolism has changed and the disease has taken over."

According to Finucane and Christmas, some studies have found higher infection and mortality rates from patients who are tube fed as opposed to hand fed. When these patients take in more calories, "they produce more urine and stool, which is a big risk factor for bed sores," said Finucane. And, "when you create a new hole in the body, you increase the chances of infection," he added.

And on quality of life, patients with feeding tubes reported nausea after a tube was placed, "and that human contact was diminished," said Christmas.

Provider Practices

During the conference call, Finucane and Christmas said they believed that staff time, Medicaid reimbursement rates, and common misunderstanding accounted for why facilities caring for patients in the final stages of dementia, cancer, or AIDS use feeding tubes, despite countervailing evidence. "It takes hours to feed a loved one using pureed food. [Tube feeding] is more efficient for the nursing facility, not the patient," said Christmas.

In addition, noted Mitchell, Medicaid in most states pays nursing homes a higher daily rate for tube-fed than hand-fed patients. "You can see how this fiscal incentive exists," she said.

Jacqueline Vance, director of clinical affairs for the American Medical Directors Association (AMDA), a group that represents nursing home physicians, countered that tube-fed patients pose no financial advantage to nursing homes. When accounting for the clinical and maintenance needs associated with a tube, and actual feeding time, staff spend more time attending to tube-fed than hand-fed residents, she explained. AMDA concurs with the research on tube-feeding benefits, and has published a white paper including a section that cautions against tube feeding in patients with advanced dementia "unless they have clearly indicated their desire for such treatment before becoming hospitalized."

The problem of tube-feeding in such cases "does not lie with the nursing home alone. The problem lies equally with the hospital," she continued. According to Vance, residents sent to the hospital for a variety of reasons (COPD, pneumonia) who also incur eating problems often return to the nursing home with a feeding tube. Vance said she has witnessed this scenario many times with patients who lack advance directives that specify no tube feeding. Once the hospital physician inserts a tube, it is difficult to reverse the decision at the nursing home, she said. Hospital physicians need to learn about the research, and explain the implications of tube-feeding to patients' families, she added.

Related Factors

In a study released in JAMA in July, Mitchell and colleagues found that a number of factors, aside from a patient's condition, predicted higher rates of feeding tube use among nursing home patients with advanced dementia. Patients who were nonwhite, relatively young, male and divorced were more likely to be tube-fed rather than hand-fed. Also more likely to be tube-fed were residents in homes that were for-profit, housed more than 100 beds, were in urban areas, lacked a special dementia care unit, and served residents who were less likely to have a Do Not Resuscitate (DNR) order.

While the study does not establish cause, Mitchell and her colleagues offer a number of reasons for their findings. Among them, large, busy for-profit facilities are trying to save money; divorced patients are less likely to have family members advocate for hand-feeding, and nonwhites may support tube-feeding to feel that they are being treated fairly. In addition, patients with DNR orders may be less likely to want to be fed artificially, and facilities with large numbers of patients with DNR orders may be better at discussing treatment options with patients and families.

A New Direction

According to Finucane, Christmas and Mitchell, the alternative to tube-feeding is not starvation, but hand-feeding. "Studies show that if you increase the variety of foods, improve their texture and color, as well as the environment in which [patients] eat, they’ll eat more," said Christmas.

"Fiscal incentives for conscientious programs of hand feeding would go a long way," toward reducing the incidence of tube-feeding, remarked Mitchell.

"Clinical and Organizational Factors Association with Feeding Tube Use among Nursing Home Residents with Advanced Cognitive Impairment," written by Susan Mitchell and colleagues and published in the July 2, 2003 issue of JAMA, is available for $12 here. "Tube Feeding in Patients with Advanced Dementia," written by Thomas Finucane and colleagues and published in the October 13, 1999 issue of JAMA, is available for $12 here. AMDA's "White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care" is available here.

This article was posted on 11/10/2003

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Some Important Clinical Issues

All footnote references link to an external page, but all these references are also published HERE.

Understanding of the evidence about outcomes of specific treatments can help guardians to make decisions. A brief summary of research about some specific medical interventions in incapacitated long-term care facility residents here follows. It is important to note that in most instances the outcome data and other information presented is in the context of caring for incapacitated elderly long-term care facility residents, particularly those with dementia, and may or may not be applicable to children or younger adults in long-term care.

Cardiopulmonary Resuscitation (CPR)

Current federal law mandates that long-term care facilities must ask residents (or their surrogates) whether they wish to receive CPR in the event of a cardiac or respiratory arrest. Research on CPR performed on elderly nursing home residents consistently shows very poor outcomes. Survival following CPR is less than 5% in this population, with most studies showing 0% survival.^21,22 The poor outcome of CPR in nursing home residents is more likely a result of the irreversibility of the underlying diseases that end in cardiopulmonary arrest in such patients.

The way in which treatments processes and outcomes are described strongly influences the decisions of patients and surrogates with regard to those treatments.²³ When presented with information about the actual likelihood of surviving CPR, for example, older patients who have previously expressed a wish to undergo CPR generally decide not to.^23,24,25

Despite consistent evidence of its ineffectiveness, CPR continues to be offered and performed in long-term care facilities, by either facility staff or emergency medical technicians.²⁶ Nursing facilities are prevented from implementing facility-wide "do not resuscitate" (DNR) policies and procedures,²⁷ and are required instead to ensure that decisions about resuscitation be expressed by individual residents or their surrogates.

In the case of CPR performed in the long-term care facility, the level of discordance between outcome data and national policy, or between evidence and practice, is extreme. This highlights the importance of educating patients, surrogates, and health care providers about the outcomes of specific medical interventions. The issue of CPR may also reflect our society's unrealistic expectations of technological interventions, even in situations in which they are likely to fail. Moreover, lawmakers and regulators may be averse to system-wide or facility-wide policies that might be viewed by some as denying choice or care to patients. Based on the best available evidence, however, it is recommended that CPR not be performed in mentally incapacitated elderly long-term care facility residents unless they have clearly indicated their desire for such treatment before becoming incapacitated.

Tube feeding

Enteral (nasogastric, gastrostomy or jejunostomy) tube feeding has recognized benefits in specific clinical situations, for example, in the treatment of acute stroke when swallowing is impaired. In the setting of severe dementia, however, its benefits are questionable.

The natural history of dementia often results in loss of ability to swallow without a significant risk of aspiration. At this stage of dementia, some clinicians initiate tube feeding in an attempt to prevent aspiration pneumonia, malnutrition and its consequences, pressure ulcers, provide comfort, or prolong life. The published research about tube feeding in nursing facility residents with advanced dementia has been extensively reviewed.^28,29 There is no good evidence that tube feeding succeeds at avoiding or reversing any of these poor outcomes.²⁸ Specifically, there is no evidence that tube feeding reduces the risk of aspiration pneumonia. In fact, the risk of aspiration pneumonia may actually be increased by tube feeding.²⁸ Furthermore, the leading cause of death in tube-fed patients with dementia is aspiration pneumonia.²⁸ Nasogastric tubes violate the gastroesophageal sphincter and, like gastrostomy tubes, provide a ready source of material in the stomach for reflux and aspiration. Nor is jejunostomy is associated with lower rates of pneumonia than gastrostomy, as neither procedure eliminates aspiration of nasopharyngeal secretions.

To date, there is no evidence that tube feeding prolongs survival among older nursing home residents. One-year mortality among tube-fed older nursing home residents with severe cognitive impairment is significantly higher than that of those not treated with tube feeding.^30,31,28 There is no published evidence to indicate that tube feeding improves the outcomes of pressure sores in this older population.²⁸

The decision to initiate tube feeding in severely demented or terminally ill long-term care facility residents is generally based on a desire to provide adequate nutrition and to prevent suffering and inexorable deterioration. Many people consider it unethical to do otherwise. Unfortunately, the use of feeding tubes in the terminally ill (such as those with end-stage malignancies) may prolong suffering, and their use in the severely demented may be counterproductive. Initiation of tube feeding in a cognitively-impaired long-term care facility resident often has adverse outcomes aside from aspiration pneumonia. Placement of the feeding tube itself has associated morbidity. Cognitively impaired residents may inadvertently or intentionally remove feeding tubes, requiring subsequent reinsertion. Physical and chemical restraints are sometimes used under such circumstances to prevent patients from removing their feeding tubes, however, physical and chemical restraints have their own adverse consequences, including discomfort, aspiration, pressure sores, and reduced quality of life. Tube feeding deprives patients the enjoyment of tasting food as well as contact with caregivers during the feeding process.

Tube feeding is not necessary to prevent suffering during the dying process. Terminally ill patients often stop eating or drinking in the days or weeks before death. Those who are cognitively intact and able to communicate frequently indicate that they do not experience hunger, thirst, or discomfort as a result of having stopped eating or drinking. Symptoms related to dry mouth can effectively be relieved with sips of water or periodic swabbing of the mouth. While patients with severe dementia may be unable to report whether they experience pain, hunger or thirst from not eating or drinking, observational studies have not shown any physical or physiologic signs of distress among those in whom tube feeding is not provided. There is no evidence that voluntary cessation of eating and drinking makes terminally ill persons physically uncomfortable.²⁹

Based on the best available evidence, therefore, it is recommended that tube feeding not be initiated in severely demented patients unless they have clearly indicated their desire for such treatment before becoming incapacitated.

Hospitalization

In patients with severe dementia, hospitalization for the treatment of acute illness entails serious risks. Even cognitively intact elders when hospitalized have an increased incidence of confusion, anorexia, incontinence, falls, deconditioning and inactivity.³² These conditions can result in such medical interventions as the use of psychotropic medications, restraints, nasogastric tubes and urinary catheters, all of which carry their own risks such as thrombophlebitis, pulmonary embolus, aspiration pneumonia, urinary tract infection, falls and sepsis.

Hospitalization is not always the best method for managing infections or other acute conditions in nursing home residents.³⁵ For example, hospitalization is not always necessary for optimal treatment of nursing home-acquired pneumonia. Immediate survival and mortality rates are comparable between patients treated in the long-term care facility and those treated in the hospital^36,37,38, and 2-month survival is higher in patients treated in the nursing home compared with those treated in hospital (Fried JAGS 1997)

Hospitalization itself is associated with additional loss some functional ability, such as the ability to transfer, toilet, feed or self-groom. These functional losses do not improve significantly by discharge, and they resolve more slowly than the acute illness that precipitated the hospitalization.³³ A large percentage of long-term care facility residents are older adults with preexisting pressure sores, cognitive impairment, decreased physical or social activity, and are thus at added risk for these complications.³⁴ Hospitalization of many long-term care facility residents thus exposes them to substantial risks that require important consideration before deciding upon hospital transfer. Emergency room or hospital transfer should be used only when it is consistent with the overall goals of care, and not as a default option when an unexpected acute illness arises.

Antibiotic Therapy

In older patients with acute infections such as pneumonia, treatment with antibiotics administered orally is often just as effective as antibiotics administered parenterally.⁴⁰ Intravenous therapy is difficult to administer to cognitively impaired patients, as they may not understand its rationale but may experience discomfort from it and try to remove the intravenous access catheter. In patients for whom parenteral antibiotics are indicated by the severity of the illness, once-daily cephalosporin therapy administered intramuscularly may offer a reasonable alternative to intravenous therapy for many infections.

In patients with advanced dementia, the effectiveness of antibiotic therapy may be limited by the recurrent nature of their infections, because the underlying causes of the infections, such as impaired swallowing, aspiration, and decreased immune function, persist after treatment of each acute episode.⁴¹ Use of antibiotic therapy for infections does not prolong survival in patients whose cognitive impairment is advanced, in those who are unable to walk unassisted, or in those who are mute as a result of severe dementia.⁴² Antibiotics do not prolong survival in patients with advanced dementia and fever.⁴² Antibiotics may not necessarily even provide comfort in patients with dementia who develop acute infection. In a study of patients with dementia treated with antibiotics for acute infection, no difference was found in patient discomfort compared to similar patients not receiving antibiotic therapy.^43,44 Analgesics, antipyretics, and oxygen can provide adequate comfort in the absence of antibiotics.

Antibiotic therapy is associated with numerous adverse effects, such as gastrointestinal upset, c. difficile infection, diarrhea, allergic reactions, hyperkalemia and agranulocytosis. While diarrhea may be a temporary annoyance to younger patients, in immobile patients and those with dementia, it can result in fecal incontinence that may lead to problematic skin breakdown. In addition, procedures that are often performed in order to diagnose or treat infections (i.e.blood-drawing, sputum suctioning) are associated with at least moderate discomfort. These procedures may also increase agitation in cognitively impaired patients who cannot understand or remember the reasons for them. Moreover, diagnostic procedures frequently fail to indicate the source of fever in these patients.⁴² Treatment is therefore often empiric. The decision to use antibiotics in long-term care facility residents with advanced dementia should take into account the recurrent nature of these infections in such patients, the adverse effects of antibiotics, the discomfort produced by accompanying diagnostic and therapeutic procedures, and the absence of evidence that these measures enhance some patients' comfort.