Tube Feeding Decisions for People with Advanced Dementia

As their dementia gets worse, nearly all patients will decrease their intake of food and water. This happens for several reasons. First, people with advanced dementia often lose the ability to use the muscles needed to chew and swallow. This change puts them at risk for choking or getting food into their lungs (which is also called “aspirating” their food), where it can block their breathing and cause pneumonia. Second, they often lose the feeling of hunger and the desire to eat. Third, people with advanced dementia can suffer from depression, medication side effects, constipation, and acute illnesses such as infections. These problems also can decrease a person’s interest in food.

By the time people with dementia have an eating problem, they often are no longer able to make decisions about their own health care. This means that someone else, usually a family member, must make decisions about medical treatments for the person. One of the therapies the decision maker may need to think about is whether the person with dementia would want a feeding tube. A feeding tube is a tube that goes through the skin and delivers food directly to the stomach. This choice is often difficult for decision maker because providing and sharing food is such an important caregiving and social activity.

How is the feeding tube put in?

Most feeding tubes for long-term use are called percutaneous endoscopicgastrostomy tubes, or PEG tubes. Putting in a PEG tube usually takes 15-30 minutes and is done while the patient is sedated using medicine. The doctor uses an x-ray or camera to see where to place the tube. Then, the doctor cuts a small opening through the skin and into the stomach. The PEG tube is inserted through this opening.

What are the risks of the procedure?

Putting in a PEG tube is usually a simple procedure that rarely causes serious or dangerous problems. However, several problems can occur, including bleeding, infection, skin irritation or leakage around the tube, nausea and vomiting, and diarrhea. These problems occur in less than 10% of patients in the first few weeks after the procedure. In studies that followed people for longer periods (for example, several months to a year), more problems, including problems with the tube (e.g, the tube getting blocked or falling out), were reported.

Will the feeding tube help my loved one gain weight and feel better?

When you are thinking about tube feeding, it’s important to define the overall goals of care.

Some of the goals of tube feeding include improving the person’s nutrition, preventing aspiration, and keeping the person comfortable. However, people with advanced dementia generally do not gain weight or have improved physical function when they have a feeding tube. Feeding tubes also do not help wounds heal or prevent pressure sores in people with advanced dementia.

Aspiration pneumonia is a common cause of death in people with late-stage dementia. And while prevention of aspiration is a goal of tube feeding, studies have shown that patients with feeding tubes continue to aspirate at the same rate as they did before the tube was placed. People with feeding tubes are more likely to be hospitalized and have to go through painful procedures. Finally, people who have feeding tubes sometimes have to be tied down to keep them from pulling out the tube.

Will the feeding tube prolong my loved one’s life?

This is a hard question to answer based on the available scientific evidence. Several studies have compared dementia patients with and without feeding tubes. All except one of these studies found that a feeding tube did not prolong life for patients with advanced dementia. Most patients with feeding tubes do not survive very long. Several studies show that 20-30% of patients who get feeding tubes die within a month and 50-60% die within a year.

What are the options for a dementia patient who has difficulty eating or swallowing?

If the patient has decreased appetite from infection, constipation, or depression, then these conditions should be treated to see if the person’s appetite gets better. If the loss of appetite is caused by a side effect of a medication, then the medicines may need to be changed.

If the patient can still chew and swallow, caregivers can hand feed the patient. Often, the person is given foods that are easy to eat. Studies show that volunteers and family members can be trained to hand feed people. One important benefit of hand feeding is that it is a time for caregivers and families to interact with the person with dementia. At this time, the person should be fed his or her favorite foods so that eating is a pleasant experience for the person with dementia and his or her family.

Even when people with late-stage dementia can no longer eat because of swallowing problems, they may be able to take small tastes of their favorite foods and beverages. Excellent mouth care is important to maintain the person’s hygiene and comfort. Other care includes treating pain and other symptoms, and providing emotional and spiritual support for the person and family. Many people with advanced dementia who cannot eat and drink qualify for hospice care, which can be provided in a home setting or a nursing home.

How can I do what’s best for my loved one in this situation?

This is a hard question to answer based on the available scientific evidence. Several studies have compared dementia patients with and without feeding tubes. All except one of these studies found that a feeding tube did not prolong life for patients with advanced dementia. Most patients with feeding tubes do not survive very long. Several studies show that 20-30% of patients who get feeding tubes die within a month and 50-60% die within a year.

Will the feeding tube prolong my loved one’s life?

A decision maker should think about what he or she knows about a loved one’s preferences and values. He or she should also learn as much as possible about the person’s current medical condition and treatment options.

A decision maker may know what the person with advanced dementia would want based on previous conversations about treatment options. A person’s choices about tube feeding or other treatments might also be included in a living will. If these sources of information are not available, the decision should be made based on other factors. First, the decision makers should consider what they know about the person’s values. What did the person enjoy in life and what gives his or her life meaning? What is important to him or her? Will inserting a feeding tube improve the person’s quality of life based on his or her values and goals?

When the decision maker doesn’t know for sure what the person would choose to do, decisions are usually made using the “best interest” standard. The decision maker thinks about the possible risks and benefits of the procedure and decides if the person’s quality of life is likely to be better or worse with the feeding tube. In people with advanced dementia, tube feeding is not likely to be helpful and may cause greater discomfort and other problems.

Other factors that affect this decision are family, religious, and community values. Decision makers should discuss the options with their families, clergy, and in some cases, members of their social or ethnic communities if they are uncertain about what to do.

Am I causing my loved one to suffer and starve to death without a feeding tube?

Many family members worry that their loved one will experience hunger and thirst at the end of life without a feeding tube. Although people with advanced dementia cannot tell us if they are hungry or thirsty, we do know from some small studies in terminally ill cancer patients that most patients do not feel hungry or thirsty even if they cannot eat or drink enough. Experts in dementia care say that most of their patients with late-stage dementia do not seem hungry or thirsty.

The doctor suggests putting in a feeding tube for a short time to see if it helps. Is this a good idea?

Sometimes, doctors might suggest using a feeding tube for a short time to see if the patient will get better and be able to eat again. This plan may work for patients who have recently suffered a stroke, because other treatment after the stroke may help them to recover the ability to eat. However, because dementia is not curable or reversible, people with advanced dementia will not regain the urge or ability to eat and drink. People with dementia are less likely to benefit from tube feeding, but are likely to suffer from problems and discomforts related to the feeding tube. In addition, family members and other decision makers often find that stopping the tube feeding and having the tube removed is a more difficult choice to make than deciding to have the feeding tube inserted in the first place.

Where can I get more information?

Here are some resources you can get from the Internet or from journals.

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