In the late stages of Alzheimer’s Dementia, patients lose their ability to eat independently. Appetite declines, swallowing becomes difficult, and coordinated use of hands is lost. As brain function continues to shut down, mental and physical functions progressively disappear. By the time the ability to eat is gone, a person is in the terminal stages of the disease.
In this setting, concerned caregivers and loved ones often choose tube feeding in hopes of sustaining a patient’s life. There are a number of medical studies that show the risks and burdens of tube feeding patients at this advanced stage of dementia are significant, and that desired benefits don’t happen. Let’s review medical facts on this meaty topic and consider the hesitation loved ones have in following the recommendation not to start tube feedings.
To clarify, I am using the term “tube feeding” to refer specifically to percutaneous tube feeding. A brief surgery is required to insert a tube into the patient’s stomach, cut a small opening in the patient’s abdominal wall, and stitch the tube in place. This tube can then be used to deliver tube feedings, liquids, and some medicines to a patient directly into the stomach.
Additionally, this article will only address the issues related to percutaneous tube feeding in end stage dementia patients who have lost their ability to eat. There are some patients with other diseases and more favorable prognoses where tube feeding can be beneficial in providing meaningful calories and nutrition. Unfortunately, such is not the case in advanced dementia patients.
Fundamentally, people choose tube feedings for loved ones with advanced dementia because they’re hoping to delay death and to maintain some degree of vitality and nourishment in the process. Data accumulated from studies over the last 30 years demonstrate that neither of these hopes is achieved by starting tube feedings in such patients. Additionally, there is a pervasive failure by both physicians and the public to recognize advanced dementia as a terminal illness. Difficulty with eating is a marker of advanced dementia, which is uniformly fatal.
Studies show no improvement in healthy body weight, muscle tissue, or protein stores.
Compared to patients who are carefully hand-fed by caregivers, patients who are tube-fed have no increased length of life. Median life expectancy for advanced dementia patients who no longer eat independently is approximately two months, whether they are tube-fed or not. Unfortunately, the quality of life for tube-fed patients often tends to be worse, not better, than patients who receive careful hand feeding. Let’s examine some of the reasons.
Confusion is already a major problem for advanced dementia patients. If they now have a rubber tube protruding from their abdomen, most will not understand why. They are likely to pull on it, tear stitches, and even totally remove it. Infections, bleeding, pain, and need for additional surgeries to reposition and even replace tubes are common.
Patients often require restraints to prevent them from dislodging and irritating the tube as above. These can be in the form of physical restraints such as mittens, or tying hands to bedrails to keep them away from the tube. Patients might also be given chemical restraints in the form of tranquilizers to sedate them. Such drugs do quiet patients, but they also make them less responsive to human interaction. Both forms of restraints increase a patient’s likelihood of developing pressure sores/bedsores because they immobilize folks for long periods of time.
Tube feedings increase patients’ production of urine and stool. Since patients at this stage of dementia are often incontinent, these body fluids tend to wind up on the patients and in their beds. Resulting skin irritation, infections, bedsores, and extra challenges maintaining cleanliness are frequent complications.
Aspiration is a term that describes what happens when food and fluids “go down the wrong way” as my father used to say. When one chokes or coughs while swallowing, it’s usually because something being swallowed is headed down the windpipe into a bronchial tube of a lung rather down the esophagus into the stomach. Such problems are rare in healthy adults. But as dementia advances and swallowing is no longer efficient, aspiration risks increase steadily.
Medical studies demonstrate no decreased risk of aspiration (nor decreased risk of pneumonia caused by aspiration) in dementia patients who are tube-fed compared with patients who receive careful comfort feedings. This finding seems surprising. But tube-fed patients continue to produce saliva that finds it way into their lungs; additionally, the tube feeding can splash up the esophagus and into the bronchial tubes, and even small particles of the feeding can be inhaled. So, the hope of decreasing the risk of aspiration with tube feedings isn’t realized.
The thought of “starving someone to death” and causing suffering in the process is a major concern of folks who opt for tube feeding. Several facts and studies counter this concern. In most illnesses (chronic and acute), a person’s appetite is diminished markedly. Just think of the last time you had the flu or a very bad cold. Likely, eating a substantial meal wasn’t at all appealing for a day or so.
Chronic illness has an even greater effect on damping the appetite. Additionally, in the final stages of dementia, a person’s digestive tract is slowing down, along with the rest of the body. Even when food and calories are introduced into the digestive system, they are no longer absorbed efficiently. Finally, interviews with patients who are cognitively intact but dying from strokes or cancers that create serious problems with swallowing reassure us that the mild thirst and hunger they develop are assuaged by mouth swabs and occasional ice chips. Extrapolating from the experience of these patients, one might assume similar physical reactions in advanced dementia patients. The concern that advanced dementia patients who aren’t being tube-fed are suffering from ‘starvation’ is not substantiated by such patient accounts.
Another reason surrogate decision makers opt for percutaneous tube feedings is to honor religious values and beliefs. If the basis for religious convictions is upholding life and preventing suffering, understanding the burdens and risks of tube feeding might actually allow decision makers to change their positions with a clear conscience. There are secular bioethicists and specific religious positions that advocate withholding interventions that cause or provoke suffering, especially for patients at the end of their lives. Hopefully, the medical facts cited above make a strong case in itemizing the burdens and suffering that tube feeding can create.
One large study (Teno et al, J Am Geriatr Soc.2011) addressed a lack of informed consent and a sense of coercion that many family members feel. The authors surveyed family members in a five-state area whose relatives had died with advanced dementia, about decisions of care and use of feeding tubes in their relatives. Approximately 11% of patients had died with feeding tubes. Over 50% of the families reported the physicians strongly encouraged feeding tube use, and nearly 13% of families felt pressured to use feeding tubes. If relatives had died with feeding tubes, family respondents were less likely to report excellent end-of-life care for their relatives than the families whose relatives had died without feeding tubes.
Apropos to the above study, Sister Carol Keehan, the CEO of the Catholic Health Association, spoke on mission-driven health care at a national meeting on palliative care in 2014. In her remarks, she told us of her conversation with a well-intentioned surgeon who seemed determined to place a feeding tube into an advanced dementia patient. In her recounting, she told the audience, she responded to the surgeon, “God never said you have to come to heaven on a full stomach.” We all chuckled, and I haven’t forgotten the phrase since! They are words of wisdom, delivered with humor.
In light of all this information, the American Academy of Hospice and Palliative Medicine created a position statement in 2013: “Don’t recommend percutaneous feeding tubes in patients with advanced dementia; instead, offer oral-assisted feeding.”
Assisted oral feedings in this group of patients provide nutrition, as tolerated. Patients benefit from the comfort and human interaction associated with such feedings. There’s an opportunity for taste, touch, and emotional connection. Recommending “Comfort Feeding Only” for patients with advanced dementia seems not only humane, but also solidly supported by evidence-based medicine.
In summary, multiple studies over several decades fail to show a benefit of tube feedings in patients with advanced dementia. In fact, there is no predictable nutritional benefit, no mortality benefit, and no decrease in aspiration pneumonia. Frequently, either chemical or physical restraints are necessary to keep the patients from pulling on the tubes. Preferable to tube feedings are assisted oral feedings, to provide nutrition as tolerated. Ironically, opting for tube feeding in advanced dementia patients is going to create more burdens and risks than benefits.
We make many difficult decisions on behalf of our loved ones as they near the end of their lives and can no longer speak for themselves. Inability to eat will occur in the final stages of dementia. Let’s make our surrogate decisions based on both love and facts.
As Mother Teresa observed, “I have found the paradox that if you love until it hurts, there can be no more hurt, only more love.”
Stephen L Hines, MD