Hard to swallow part 3: Tube feed or not tube feed
When someone is aspirating food and drink, and they don't improve with exercises or drink thickeners, their doctor may recommend they don't take anything by mouth. The person may then need to obtain primary nourishment from an enteral feeding tube, or "g-tube." (see my previous blog).
But for most of us, eating is a major source of pleasure. While it's reasonable to hold oral feeding when it's likely a person's dysphagia will improve, abstaining from oral intake entirely can be intolerable for someone who may aspirate for the rest of their time on this earth. It's important to understand that while tube-feedings can be beneficial to health, they are not proven to prevent aspiration pneumonia or prolong life in someone with severe dysphagia. If you or your loved one is in this situation, it's important to be aware of the possibility for improvement, as well as the alternative to go ahead and eat despite the risk of aspiration. While some refuse a g-tube and continue to eat as they please, others decide to get their primary nourishment from a tube but continue to take small amounts by mouth known as pleasure feeds. This is a personal decision that must be made with special care and consideration.
Before making a decision on enteral (g-tube) feeding, it's important to know that people can still aspirate even when feeding is only through the tube. Also, the swallow study that identifies a person is aspirating does not necessarily predict that the person will have complications from aspiration. These studies are best used in detecting the presence of aspiration and testing methods to reduce the risk, such as using drink thickeners and certain head positions. Scientific evidence supports g-tube feeding in a select population, but many studies have shown enteral feedings are not universally beneficial. Support for enteral feeding is strongest for patients who have a reversible illness (i.e. an infection); those with good functional status who have a "proximal" (esophagus, stomach, small bowel) gastrointestinal obstruction from cancer; patients receiving chemotherapy or radiation involving the proximal GI tract; and those with HIV or Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig's disease). Feeding by g-tube is not shown to improve survival in patients with advanced cancer.
If you've been found to aspirate but have decided to continue to eat by mouth, there are a few key precautions to take. Eat sitting upright, and avoid chunky food that can block your airway if you aspirate. This includes avoiding peanuts, popcorn, and raw vegetables, and chewing meat and vegetables thoroughly before swallowing.
Eating meat that is ground up, or with gravy, will help it go down easier. Other good food choices include pudding, oatmeal, pancakes with syrup, mashed bananas, scrambled eggs, macaroni and cheese, and casseroles without rice. Maintaining good oral hygiene is also important in reducing the likelihood of developing an infection from aspirating. Brush your teeth twice daily or more often, and rinse with mouthwash after brushing to reduce the number of respiratory pathogens (bacteria that cause pneumonia) in your mouth.
This blog is the last in a three-part series on dysphagia, a serious and complex complication of cancer and cancer treatment. The decision to eat or not to eat, along with the decision to be fed by a g-tube, takes special care and consideration, and should only be made with full understanding of your prognosis. If you've been treated for cancer, especially for head and neck cancer, it's important to identify when you're having trouble swallowing and to speak with your doctor about how to manage this problem. Even if you're not having symptoms, your doctor may want to evaluate your swallow to see if you're aspirating silently and at risk from related complications. If testing determines that you are at high risk of aspirating foods, I recommend scheduling a conference with your doctor, a speech pathologist, and other members of your care team, so you and your health care providers can best determine which feeding options are right for you.