Feeding Tubes in Patients with Severe Dementia

Author: Ina Li
Date: April 15, 2002

Patients with advanced dementia are among the most challenging patients to care for because they are often bedridden and dependent in all activities of daily living. Difficulty with eating is especially prominent and distresses family members and health care professionals. Health care professionals commonly rely on feeding tubes to supply nutrition to these severely demented patients. However, various studies have not shown use of feeding tubes to be effective in preventing malnutrition. Furthermore, they have not been demonstrated to prevent the occurrence or increase the healing of pressure sores, prevent aspiration pneumonia, provide comfort, improve functional status, or extend life. High complication rates, increased use of restraints, and other adverse effects further increase the burden of feeding tubes in severely demented patients. Feeding tubes should be avoided in many situations in which they are currently used. The preferable alternative to tube feeding is hand feeding. Though it may not be effective in preventing malnutrition and dehydration, hand feeding allows the maintenance of patient comfort and intimate patient care. (Am Fam Physician 2002;65:1605-10. Copyright[C] 2002 American Academy of Family Physicians.)

The use of artificial nutrition and hydration in patients in the final stages of dementia is a controversial and emotional issue. This topic will become increasingly important because the prevalence of dementia will continue to rise as the population ages. The most common form of dementia is Alzheimer's disease, and its prevalence will nearly quadruple in the next 50 years, by which time approximately one in 45 Americans will have the disease.(1) In the end stages of dementia, patients are typically incapable of having relationships with other people, bedridden, incontinent, and unable to eat and drink for various reasons. Problematic eating patterns may include indifference to food, refusal of food, or failure to manage the food bolus properly once it is in the mouth.(2,3)

Family members and physicians are often attracted to the perceived benefits of providing artificial nutrition and hydration to patients with severe dementia. These techniques have been promoted as a method to improve nutrition, maintain skin integrity by enhanced protein intake, prevent aspiration pneumonia, minimize suffering, improve functional status, and extend life. Additionally, providing artificial nutrition and hydration has been associated with caring and nurturing whereas forgoing these measures has been equated with neglect and abandonment.(4,5) Thus, when caretakers are faced with the decision of whether or not to provide artificial nutrition and hydration, it seems sensible to provide it by any means. Percutaneous endoscopic gastrostomy (PEG) tubes often have been used for this purpose, and it is estimated that approximately 30 percent of all PEG tubes are placed in patients with dementia.(6)

Unfortunately, most of the data regarding feeding tubes in severely demented patients are based on observational studies, retrospective studies, or data extrapolated from mixed populations. These factors may significantly confound the ability to appropriately assess the risks and benefits of feeding tube placement. Variability in aspiration pneumonia, functional status, and mortality rates may be related to differences in patient cohorts. Patients who receive feeding tubes may be more debilitated than those who do not.

Another major research obstacle is the designation of an appropriate control group.(2,7) For example, results may vary if patients in the control group were hand-fed by loving family members versus nursing assistants in long-term care settings. Past studies are further confounded by the fact that the stage at which tube feeds are initiated varies among patients because there is no standard guideline for this procedure. In the absence of unequivocal evidence that demonstrates the positive or negative consequences of tube feeding, patients, family members, and physicians may still feel that the insertion of a feeding tube is appropriate.(8)

Despite these limitations, studies have shown that feeding tubes are of unproved benefit in ensuring adequate nutrition, preventing pressure sores, preventing aspiration pneumonia, providing comfort, improving functional status, or extending life in patients with advanced dementia. The procedure can be burdensome through tube-related complications and the use of restraints.

This article will examine whether artificial nutrition and hydration in patients with severe dementia actually provide the assumed medical benefits associated with them.

Malnutrition

Demented patients who stop eating become malnourished rapidly. Development of abnormal markers of nutritional status are often used to justify feeding-tube placement in the belief that tube feeding would help prevent the consequences of malnutrition, which include pressure sores, infection, and death.

A sample(9) of 40 chronically tube-fed patients with poor functional and cognitive status demonstrated that weight loss, severe depletion of lean and fat body mass, and micronutrient deficiencies persisted even if generous amounts of standard enteral formulas were provided. [Evidence level B: clinical cohort study] Other studies have demonstrated that weight loss increased in amount and frequency as the duration of the tube feeding lengthened.(10,11) Other nutritional markers such as hemoglobin, hematocrit, albumin, and cholesterol levels also did not show any significant improvement after a feeding tube was placed.(10,11)

The persistent malnutrition in these chronically tube-fed patients in the face of adequate amounts of formula suggest that "the long-term effects of chronic disease, immobility, and neurologic defects may undermine attempts at long-term nutritional support."(9) Negative outcomes may be unavoidable in these patients despite tube feeding.

Pressure Sores

The data linking malnutrition to the development or worsening of pressure sores are limited. Two retrospective cohort studies(12,13) did demonstrate that during six months of follow-up, poor oral intake was associated with nonhealing pre-existing pressure sores and the formation of new pressure sores. Malnutrition is often cited as a risk factor for developing pressure sores, and feeding tubes are often placed to improve nutritional status and theoretically improve skin integrity. However, one retrospective study(14) observed that the incidence of decubitus ulcers was not statistically different between those patients with (21 percent) and without (13 percent) feeding tubes.

A MEDLINE search(15) from 1985 to 1994 was performed to review the relationship between malnutrition and pressure sores and to gauge the effectiveness of tube feeding in improving the outcomes of pressure sores. The conclusion suggests that the data linking malnutrition and the development of pressures sores were incomplete and contradictory and that "the routine use of tube feeding to prevent or treat pressure sores is not clearly supported by data."(15) In a follow-up review,(2) there were still no data to support the use of feeding tubes to improve pressure sores.

Aspiration Pneumonia

Interrupting the cycle of eating, aspiration, and subsequent pneumonia is one of the most commonly cited reasons for using a feeding tube. However, there are no data that show feeding tubes reduce the risk of aspiration pneumonia in patients with dementia.(7,16) In fact, some data have shown that the risk of aspiration is increased. One study(14) examining the risk of aspiration pneumonia in 104 severely demented nursing home patients found that patients with feeding tubes experienced significantly more episodes of aspiration pneumonia (58 percent) than the patients without feeding tubes (17 percent; P [less than] 0.01).

In assessing whether one site of feeding tube placement was superior to others, investigators compared the incidence of aspiration between patients with jejunostomy tubes and those with gastrostomy tubes. A meta-analysis(17) of 45 studies between 1978 and 1989 with a total of 2,976 gastric tubes and 386 jejunal tubes found that aspiration rates were highly variable across different patient populations and studies. The authors concluded that there were no data to demonstrate decreased risk of aspiration at one feeding tube site compared with another.(17) The continued risk of aspiration despite feeding tube placement may result from continued reflux of gastric contents and aspiration of oropharyngeal secretions.(18)

Quality of Life

TABLE 2Recommendations for Oral Feedingin Patients with Severe DementiaPreventing aspiration pneumonia for those patients at riskSit the patient upright (45 degrees) while eatingBolus size of less than one teaspoonRestrict clear liquidsPlace food well into the mouthEncourage gentle coughs after each swallowRemind to swallow multiple times after each mouthful of food to clear the pharynxStrategies to improve food intakeBasic tenet: Alter flavors, amounts, consistency, and availability of food.Use strong flavors Hot or cold (not tepid) Gravy Juices Enrichers (e.g., cream, spices) Sweets (e.g., miniature chocolate bars)Use varying amounts of food Try finger foods (e.g., sandwiches, chicken fingers) Use preferred foods in large quantities (e.g., ice cream)Adapt food consistency to suit the individual Try liquid supplements (Should be given one and one half to two hours before the next meal; should never be given with the meal as it can promote satiety) Try slightly thickened food (e.g., puddings, milkshakes) Try blending foods (e.g., cereals mixed with eggnog or pudding)Make food available to the patient Lengthen mealtimes because it takes longer for demented patients to ingest, chew, and swallow food Allow patients to keep their supplements (e.g., liquid supplements and/or candy bars) at the bedsideModify environmental factors Capitalize on the midday meal when patients demonstrate maximal cognitive function For those resistive or combative at mealtime, try holding hands or reassuring touches on the arms, or try cheerful conversations or singing softlyInformation from references 5, 13, and 30 through 33.

The author indicates that she does not have any conflicts of interest. Sources of funding: none reported.

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The Author

INA LI, M.D., is an instructor in the family medicine department at Thomas Jefferson University Hospital, Philadelphia. She received her medical degree from the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, Piscataway, N.J. Dr. Li completed a residency in family medicine and a fellowship in geriatrics at Thomas Jefferson University Hospital.

Address correspondence to Ina Li, M.D., Dept. of Family Medicine, 1015 Walnut St., Curtis Bldg., Suite 401, Philadelphia, PA 19107

(e-mail: kostali@mindspring.com). Reprints are not available from the author.

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