A week before Thanksgiving, my 88-year-old mother ended up in the hospital with aspiration pneumonia, a common ailment among late-stage dementia patients caused by inhaling food into the lungs. Before doctors had even seen her test results, I heard the question: "Do you want a feeding tube?"
As my mother's health care proxy, I had to decide. So I plugged "elderly," "dementia" and "feeding tube" into Google, and found this: "Tube feeding in residents with advanced dementia does not increase survival. It does not prevent aspiration pneumonia, malnutrition or pressure ulcers. It does not reduce the risk of infections or improve functional status or comfort of the patient."
The source was the Alzheimer's Association, whose site also mentions a number of serious adverse consequences, including increased mortality among elderly dementia patients, decreased quality of life, complications caused by the tube, and the frequent need to use physical and chemical restraints to prevent confused patients from pulling it out.
While feeding tubes are sometimes used as a short-term measure for acute conditions that affect a person's ability to eat, like cancer or a stroke, they are often turned to as a permanent solution for dementia patients, whose swallowing problems are expected to grow worse over time. But for many, feeding tubes may be a pointless intervention because these patients can aspirate on their saliva or on regurgitated stomach contents, and depressingly, dementia is a terminal condition.
Feeding tubes are inserted through the abdominal wall into the stomach to deliver nutritious formula. Complications such as diarrhea, which in turn can cause bedsores, are common, along with confusion and distress from having a foreign object in one's body.
Elderly people with dementia have seen many of life's pleasures stripped away one by one, with eating often one of the few that remain. Why take that away, too? And why would three of my mother's doctors suggest doing so without mentioning any alternatives?
Unfortunately, this is business as usual in many hospitals, according to Dr. Joan Teno, a specialist in end-of-life care at Brown University's Alpert Medical School in Providence, R.I., who says the driving force is economics. "The goal in hospitals is to discharge the patient as quickly as possible, and a feeding tube has become an expeditious way of doing that, of solving the patient not eating and getting them back to the nursing home," said Teno, who serves as associate director of Brown's Center for Gerontology and Healthcare Research. "By getting a patient discharged sooner, hospitals save money. And it's my opinion, if you gave these patients some time, they'd actually regain the ability to eat."
At least 20 studies have concluded that people with dementia don't benefit from feeding tubes. And the tubes can cause agitation, which leads some patients to end up in physical or chemical restraints -- a quarter and nearly a third, respectively, in a 2011 study by Teno. Many would do fine on a diet of pureed and liquid food, which can be hand-fed if necessary.
Yet more than a third of nursing-home patients with advanced dementia continue to receive the tubes -- in part because the facilities' staff is stretched too thin to hand-feed. "It can take some time and patience to fully assess a patient's ability to swallow," said Dr. Steven Itzkowitz, a gastroenterologist and professor at Mount Sinai Medical Center.
None of the doctors overseeing my mother's care brought up the hand-feeding option, though a swallowing test showed my mother could handle thick liquids and soft foods and that she has a 24-hour aide, making her an ideal candidate for hand-feeding.
That's pretty common, too, according to Teno. Her 2011 study of nearly 500 relatives of nursing-home dementia patients in five states found that doctors rarely discuss risks and alternatives with patients or their advocates.
But there are ways patients can protect themselves -- and they apply not only to feeding tubes, but to a whole host of medical interventions and issues that affect vulnerable populations.
Before dementia progresses or infirmities worsen, patients should appoint a health care proxy to help them make decisions, and they should sign advance directives specifying the sorts of treatment they do and don't want, as my mother did. "It's even more important to not just sign these things, but do it in a discussion with your family," said Arthur Caplan, director of the medical-ethics division at NYU Langone Medical Center. "The people who are going to speak for you need to know your wishes." Patients or their advocates should also be proactive about doing their own research.
My mother, a feisty woman who loves nothing better than family gatherings that revolve around great food, would no doubt have become confused by a foreign object in her body and tried to yank it out, just as she did her oxygen nosepiece while she was in the hospital. The physical or chemical restraints that might well have followed would have been the death knell for her quality of life -- and her dignity.
The health crisis she faced is one that affects many millions. While Alzheimer's is already one of the nation's leading causes of death, the number of dementia sufferers is expected to triple to 15 million by 2050 as the population ages -- forcing many more families to grapple with these issues.
Nearly all dementia patients eventually develop swallowing problems, which often result in their death, either through aspiration pneumonia or malnutrition.
Two days before my mother landed in the emergency room with a cough, shortness of breath and an odd gurgling sound in her lungs, we'd gone out for a big family dinner at a seafood restaurant. How could there be no middle ground between that dinner and a feeding tube?
Thankfully, we found one. Her doctors eventually agreed that it made sense for her to try a pureed diet, though only after I made it clear we wouldn't consider a feeding tube. Had I not, she might well have one now -- along with a life she felt wasn't worth living.
Mom was released from the hospital on Thanksgiving Day, and we celebrated with pureed turkey soup. By her 89th birthday on Dec. 20, she had graduated to ground food. We're both looking forward to a new year filled with family get-togethers and more memorable meals.