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Huntington's Disease Caregiving

Feeding Tube Decision in HD
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Tube Feeding
Betsy Gettig, MS, CGC
Toni Finney, BS
Department of Human Genetics
University of Pittsburgh
There are many interventions and strategies that can help to preserve swallowing and to lessen the risk of choking. If all attempts fail to improve swallowing, alternative methods of feeding such as tube feeding will be discussed with families.

The task of deciding what is best can be difficult and emotional. This issue usually arises when a person with HD is in the end stages of the disease. However,  this issue should be discussed well in advance by  the person with HD, their family and the health care provider. By the late stages of HD, the person is often unable to meet nutritional needs, tends to become dehydrated, or aspirates all possible food consistencies, often reflected by frequent bouts of pneumonia. Because of the choking the eating process may have become unpleasant.

Making the Decision: Frequently asked Questions:

What is tube feeding and why is it used?

Tube feeding is a method of providing nutrition to people who cannot sufficiently obtain calories by eating or to those who cannot eat because they have difficulty swallowing.  Tubes which transport nutritional formulas can be inserted into the stomach (G-tubes), through the nose and into the stomach (NG-tubes), or through the nose and into the small intestine (NJ tubes). The NG and NJ tubes are considered to be temporary and the G tube is considered more permanent but it can be removed.

With all tube feeding approaches, if a person is able, he/she may continue eating and drinking while the tube feeding provides the consistent caloric intake needed for weight maintenance or gain. Thus oral intake can be continued for more pleasurable sensations, such as small bites of a favorite food. 

Why is tube feeding an issue to be considered by HD families?

All HD patients will have difficulty swallowing, known as dysphagia, at some point in time.  Choking on foods and liquids, difficulty clearing excess food from the mouth, and the unexpected  intake of air, can cause difficulty swallowing.  HD patients may need to consume an extremely high number of calories to maintain their body weight. 

Are there any steps that can be taken to aid swallowing?

Patients should be referred for consultation with a speech-language pathologist (SLP) or speech therapist who can administer regular swallowing tests.  The SLP can be helpful at all stages of HD.  The SLP can evaluate communication and swallowing function for the person with HD. The SLP can make recommendations that involve positioning issues, feeding techniques, diet consistency changes, and education of the person with HD, family members, or caregivers.

When should the family start considering tube feeding?
The family and patient should begin discussing tube feeding as an option upon diagnosis of HD. It is a very important decision to be made and will be easier if the person with HD's wishes are understood and if family members can agree upon the decision long before tube feeding is considered.
When should the family start considering tube feeding continued

This is not an easy decision to make by an individual or a family. A person with HD should write down his/her care wishes or at least let family members know their opinion about tube feeding. A living will or advanced directive is an important document for a person with HD. Two sources with more information are:
Advanced Directives & Do Not Resuscitate Orders or Health Care Advance Directives 
 

Is tube feeding effective in preventing aspiration pneumonia?

Aspiration pneumonia is caused by the aspiration of food into the lungs and is the most common cause of death for persons with HD.  There has not been any literature published to demonstrate that tube feeding reduces the incidence of aspiration pneumonia.  Furthermore, studies have been published that show a high occurrence of aspiration pneumonia with patients who have been tube fed. This is most likely due to aspiration of saliva, which contains the bacteria found in the mouth. Good oral hygiene is required even when a person receives tube feeding. 

Does tube feeding prolong a patientís life by providing calories?

Data suggests that tube feeding is beneficial if the patient has a reversible illness, which is not the case with HD. If a person is actively dying, their body no longer absorbs nutrients and cannot utilize the nutrients for the work of the body.  Therefore, tube feeding at the end stages of HD would not be beneficial under these circumstances and would be viewed as unnecessary.

Tube feeding may extend a personís life span and thus prolongs the disease. At the same time, family members find it difficult to decide against alternative feeding because death may be hastened by their decision. There are no easy answers and it can be very hard to gauge a personís quality of life at the time this issue arises. 

Does tube feeding increase quality of life and reduce suffering?

Actively dying patients do not experience feelings of thirst or hunger, but instead die a peaceful death as if they were in a coma.  However, tube feedings can cause discomfort  the need for physical restraints to prevent the tube from being pulled out, increased risk  infection, and discomfort. 

Where do I turn for help?

Support can come from your family and professionals who can offer guidance and assist with this kind of decision making, such as your physician, nurse, social worker, SLP, chaplain, or dietitian. Support from clergy often helps guide a family through this decision. In addition, some hospitals have ethics committees who can assist with decision making on alternative feeding. Again, the best scenario occurs when the desires of the personís with HD are clearly stated well in advance of the need to make a decision about tube feedings.
Other Related Resources
Feeding Tubes~Advanced Stages of HD

Advance & Other Directives:

 Estate Planning-Our Final Journey