Many of those suffering from dysphagia will end up aspirating, which means that food — along with digestive enzymes and millions of bacteria — veers down the wrong path and into the lungs. We have all experienced the hacking cough when you swallow and it goes down the “wrong pipe.”
If enough food, destructive enzymes and bacteria deviate from the esophagus to the lungs, the results can be deadly, including pneumonia and respiratory failure. All that protects us from aspirating is a thin, cartilaginous flap of tissue called the epiglottis. Like all of the other muscles and tissues in our body, it weakens with aging and illness, putting people at risk. Given the complexity of the swallowing process, many diseases lead to dysphagia, and the exact cause isn’t always identified. You may have never heard of dysphagia, but it is one of the biggest killers in America, and the treatment may be worse than the disease itself.
What can doctors do to stop it? Not much. There are a few simple tests to diagnose the severity of dysphagia. It begins with sips of water at the bedside, and if needed can go as far as more-complex tests such as video swallow studies that quantify the amounts of liquid being aspirated.
The treatment for aspiration is to spoil the experience of eating. For a small amount of aspiration, doctors may thicken your liquid drinks. Thickened liquids are a concoction of unflavored, powdered starch, which can be made to the thickness of either “nectar” or “honey.” Imagine industrial-strength Kool-Aid powder without any flavor and with a tendency to solidify. A group of geriatricians at the University of California at San Francisco challenged themselves to subsist on thickened liquids for a mere 12 hours; few made it through, and all of them were disgusted during the process, suffering from a combination of thirst, dry mouth and premature fullness. Solid foods can be pureed and processed into mush. If that’s not enough to stop aspiration, doctors make a patient “NPO” (“Nil per os,” which is Latin for “nothing by mouth”), where no food or drink is allowed to be swallowed.
A 2009 study of thickened liquids found that people drank far less when put on thickened liquids, causing dehydration and higher rates of urinary tract infections. Even worse, it is unclear whether thickened liquids prevent pneumonia and death. A recent study comparing thickened liquids to strategies where patients with dementia were encouraged to drink in a chin-tucked position found that the two were equivalent in preventing pneumonia.
There are only a few situations where making a patient NPO clearly helps, and in many situations it does not. No matter what is done about food, the human mouth is a constant factory of bacteria and enzyme-saturated saliva, which continuously drips down the back of the throat. Even patients who are NPO will continue to aspirate if their dysphagia is severe enough.
Yet the fear of massive aspiration events keeps doctors from allowing foods and liquids anywhere near these patients. And then the real trouble begins: what should doctors do about long-term nutrition when keeping patients NPO? A couple of days without food may be torture, but more than that means starvation.
In the short term, we doctors can thread a plastic tube through the nose down to the stomach and pump sustenance into the body. And for the dementia patients who are never expected to recover their ability to swallow, surgeons place permanent feeding tubes that are inserted through the abdominal wall into the stomach. Dinner at a nursing home near you may look like a dystopian fast-food stop: a hallway of humans suffering from dementia with bags of graham-cracker-colored nutrition dripping directly into their guts from plastic bags hung above their heads.
The American Geriatrics Society flatly recommends against placing feeding tubes in patients with advanced dementia, and endorses hand-feeding by caregivers as a safer and more humane approach. Placing feeding tubes in these patients does not reduce the likelihood of death or pneumonia, and is instead associated with agitation, pressure ulcers and a bevy of other tube-related complications. A full quarter of dementia patients who get feeding tubes need to be physically restrained, with soft handcuffs pinning them to their hospital bed to prevent them from pulling the tube. Rather than preventing suffering in those with advanced dementia, feeding tubes can cause it.
A recent study retrospectively analyzed the interactions that family had with hospital staff as their loved ones were dying of advanced dementia. Family members reported that the risks of inserting a feeding tube were mentioned only half of the time. Ten percent of the time, hospitals and physicians inserted feeding tubes without a discussion at all.
It’s time to rethink the way health-care professionals and we as a society address dysphagia. To be clear, there are instances where dysphagia diets, NPO and even feeding tubes make sense. For example, these interventions may be part of the road to recovery from a stroke, surgical procedure, or intensive care unit stay. However, for the majority of cases, thickened liquids and feeding tubes have questionable benefits at best. It is reasonable for hospital teams to evaluate how patients swallow, but the sanctity of food should not be taken away on the false promise of an improved life span or a reduction in lung infections.
For doctors like us, this means initiating a conversation about the value that each patient places on eating before evaluating how food passes over the epiglottis. It also means being forthcoming about the lack of efficacy of thickened liquids and feeding tubes, and the definite risks of these approaches. Turning to less aggressive but comparable remedies, like the simple chin-tuck maneuver, may be a solution.
Patients, friends and family members of those who are hospitalized and severely ill should feel empowered to ask physicians about the risks of thickening fruit juice to more of a fruit paste. We must become comfortable with simply saying no, if the downsides of tubes and forgoing the taste of apple pie are too great. For our loved ones with advanced dementia, our goals for them may simply be to savor the food at the dinner table. Eating food and the surprisingly complex act of swallowing, while not a uniquely human endeavor, may just be what makes life worth living.
Jacobs and Lang are physicians at Brigham and Women’s Hospital in Boston.