Should Patients with Advanced Dementia Be Tube Fed?

by Laurie Lewis

Diminished food intake is common in patients with advanced dementia, who may even stop eating entirely. When this happens, health care professionals may be tempted to insert a feeding tube to assure adequate nutritional intake. But many care providers, including four physicians interviewed for this article, suggest a less aggressive approach.

"A patient with advanced dementia who is not eating is far different from a healthy person who is starving in the desert," said Muriel Gillick, MD, Physician-in-Chief at the Hebrew Rehabilitation Center for Aged in Boston.

George Taler, MD, CMD, Director of Long-Term Care at Washington Hospital in Washington, DC, agreed. "Many of these patients need very little food because they are physiologically inactive; their bodies have shut down."

"Nutrition serves a purpose only if the body systems can use it. If the organ systems are in severe decline and not functioning, nutrition serves no purpose," said Steven Levenson, MD, CMD, a Multi-Facility Medical Director in Baltimore, MD, and Chair of Caring's Editorial Board.

Ladislav Volicer, MD, PhD, Clinical Director, Geriatric Research Education Clinical Center and Medical Director, Dementia Study Unit at EN Rogers Memorial Veterans Hospital in Bedford, MA, summarized the case against tube feeding by explaining that "advanced dementia is a terminal disease. Care is palliative, not curative."

Because palliation is the goal of management of patients with advanced dementia, the patient's comfort in the absence of full dietary intake must be considered the primary goal. "A decision to withhold tube feeding doesn't mean we are abandoning the patient," said Dr. Gillick. "We need to emphasize what we are going to do rather than what we are not going to do."

Practice Variations

Although the trend is away from tube feeding for patients with advanced dementia, such an approach is by no means universal. A survey of nursing homes in four states found wide variations in tube feeding practices. The prevalence was as low as 7.5% in Maine and as high as 40.1% in Mississippi (J Am Geriatr Soc 2001; 49:148-152). "Such wide variation in prevalence usually means lack of agreement about whether a treatment is beneficial," said Dr. Volicer, who is also a member of Caring's Editorial Board.

He himself has little doubt, however. No patient on Dr. Volicer's 100-bed dementia special care unit has been tube fed in the past 10 years.

The decision to withhold tube feeding is not made by Dr. Volicer or the staff. Such treatment decisions are left to the patient's family. The staff explains that advanced dementia is a terminal disease, without hope for recovery. Family members are assured that staff will make every effort to get the patient as much nutrition as possible if they decide not to tube feed. "Once they understand the situation, no family has opted for tube feeding," Dr. Volicer said. "No family has opted for resuscitation, either," he added.

Dr. Taler noted that in advanced stages of a progressive degenerative disorder such as Alzheimer's disease, tube feeding does not have any demonstrable effect on the course of the illness or on longevity. "Tube feeding may not be medically ineffective, but it is medically inadvisable," he said. He tells families that tube feeding is optional under these circumstances and advises against it. If family members insist on tube feeding, however, he will not try to dissuade them.

For many families, the greatest concern is whether the patient will suffer or be uncomfortable if he or she is not receiving adequate nutrition. Because patients in end-stage dementia are unable to communicate their discomfort in words, the answer is not certain beyond a doubt. "But we have indirect ways of knowing," said Dr. Gillick. "A patient who is uncomfortable will moan or thrash about. And cognitively intact patients who cannot eat and are dying from other diseases, such as cancer, have told us that they are not uncomfortable except for a dry mouth, and that can be relieved with ice chips or a few sips of water."

Because their physical and physiologic activity have slowed considerably, patients with advanced dementia may survive months or even years on minimal caloric intake. According to Dr. Taler, most patients will lose weight, but then they reach a plateau and stabilize. He described one patient with a stage-4 pressure ulcer who consumed only about 600 calories a day. "She was very thin. But amazingly, the ulcer eventually healed," he said.

Alternatives to Tube Feeding

Dr. Taler stressed the need to look for remediable explanations for why a patient with advanced dementia may not be eating enough. Is the patient depressed? Does she have mouth pain or poorly fitting dentures? Is the food or the eating environment unappealing? Does the patient need help with eating? She may have the physical dexterity to get the food from her plate to her mouth, but does she remember how to use a spoon or fork? Does she need to be reminded to chew and swallow?

One-on-one eating assistance by a staff member or a trained family member or volunteer can make a difference in food intake. "It takes more time to feed a patient by hand than to manage tube feeding. But it's better for the patient to have normal human contact during eating," said Dr. Volicer.

Dr. Levenson suggested offering food every few hours. "Offer something the patient likes even if it is not nutritious, just so the person can maintain weight," he said.

Liquid nutritional supplements do not need to be fed by tube. They can be taken orally throughout the day to boost nutritional intake and maintain hydration.

For the patient's comfort, hydration needs to be assured even if nutritional intake is minimal. Oral intake is the preferred way to maintain hydration. Offer small drinks of water at frequent intervals. If oral hydration is not possible, subcutaneous fluid administration is preferable to keeping a patient attached to an intravenous apparatus, Dr. Levenson suggested.

Comfort measures demonstrate to the patient and family that staff still care despite the patient's terminal status and the decision not to tube feed. Dr. Gillick mentioned a few caring, nonnutritive comfort measures: keeping the patient warm; having the patient get out of bed; playing music the patient might enjoy.

When Tube Feeding is Chosen

The argument against tube feeding applies to patients in the terminal stage of progressive dementia. The decision whether to tube feed is likely to be different if a patient with dementia is not at end-stage status. A patient with an acute, treatable, concomitant illness such as pneumonia or depression may benefit in the short term from tube feeding. Families vacillating on the tube feeding decision also might want a short-term trial to see if it makes any difference in the patient's status.

If a feeding tube will be used for only a short period, a nasogastric tube is usually inserted. The nasogastric tube can be uncomfortable, and it needs to be checked and flushed frequently. Plus, as Dr. Taler noted, "it's hard to kiss your mother when she has a tube in her nose."

When long-term tube feeding is desired, a gastrostomy tube is preferred. A surgical procedure is required to place the tube, but it is quite safe. Problems to watch for in a patient with a gastrostomy tube include leakage, which can irritate the skin around the gastrostomy site, and diarrhea. The diarrhea may be caused by "dumping syndrome": rapid emptying of gastric contents into the colon. Also, medications sometimes are changed to elixir form so that they can be given by tube, and most elixirs contain sorbitol, which can cause diarrhea.

A patient will not necessarily do better with a feeding tube, Dr. Taler cautioned, noting that the adequacy of feeding needs to be assessed because "the patient may not be getting enough nutrition through the tube."

Dr. Taler summarized the decision to tube feed a patient with dementia with these words: "Choose the patient wisely. If you tube feed, be sure you are feeding enough."

Medical journalist Laurie Lewis is a Contributing Writer to Caring.

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