Clinical Geriatrics

I recently ran across an article in The New York Times about a subject that has long been an important and pressing issue in geriatrics and long-term care: the use of tube feeding in patients in the final stages of dementia. Eating problems are frequent complications in patients with advanced dementia, and this complication is associated with high mortality.¹ The Times article, “Feeding Dementia Patients with Dignity,”² opens with an anecdote about 75-year-old Rosemary DeFelice, who, in the last stages of Alzheimer’s disease, has lost the ability to eat. Her daughter, Cyndy Viveiros, must decide whether her mother should have a gastric feeding tube inserted.

“This quandary—which usually arises near the end, when Alzheimer’s begins to destroy the part of the brain that controls eating—is often presented as a stark choice between providing nourishment and withholding it,” the Times article notes. “But social workers advising Ms. Viveiros suggested another option: continuing to have her mother carefully fed by hand, giving her only as much as she wanted and stopping if she started choking or became agitated.” This option, known as “comfort feeding only,” is the one Ms. Viveiros, with great relief, chooses for her mother.

Articles like that one can play a significant role in raising awareness of important issues surrounding the use of feeding tubes among the terminally ill, and they can help physicians and other healthcare professionals address this important issue with patients and families. Among other things, it’s imperative that we raise questions about preferences concerning tube feeding when confronted with an individual with a chronic disease—especially dementia—that has a predictable, slowly progressive course over years, and is likely to lead to feeding difficulties in its advanced stage. In such cases, educating the patient and/or the surrogate decision maker about feeding options, then learning his or her preferences regarding feeding and documenting these to guide later decision making, is essential. Because the appointment of an advocate for healthcare decision making can help ensure that the patient’s wishes are honored in the future, discussions concerning advance directives are also important. The American Geriatrics Society’s (AGS) Foundation for Health in Aging has published a free, easy-to-understand guide to advance directives, available at http://www.healthinaging.org/public_education/advance_directiveV1.php, that can help patients and their loved ones make the most of these important tools. The value of informed decision making in these cases also highlights the need for patients and family members to improve their health literacy, defined by the Agency for Healthcare Research and Quality (AHRQ) as the ability to obtain, process, and understand basic health information and services needed to make appropriate decisions.³ Here, too, healthcare professionals can play an important role in promoting health literacy in discussions with patients and loved ones, though limited reimbursement, time, and staffing available for this important discussion and key aspect of care coordination and planning can make this challenging.

Tube feeding may be appropriate in certain circumstances, such as when a patient is recovering from head and neck surgery, has esophageal obstruction, has had a recent stroke, or has another neurological disorder. It may also be appropriate when difficulty swallowing prevents oral intake of adequate calories. But it should never be an automatic next step if other feeding strategies have failed. Addressing the benefits and risks of tube feeding, discussing the possibility of feeding by hand instead, and addressing the medical realities and goals of care are critical.

The decision to insert or forgo a feeding tube should be based on current and accurate information, not misconceptions.