Decision-Making About Feeding for Persons with Advanced Dementia

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. Viveriros, 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 https://www.healthinaging.org, 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 for improved 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 is critical. The decision to insert or forgo a feeding tube should be based on current and accurate information, not misconceptions.

Many family members, as well as some healthcare providers, have misconceptions about the dying process that can complicate this risk/benefit consideration. In those with advanced dementia, it has been shown—and families need to understand—that tube feeding does not lead to a better quality of life or a longer life, nor does it facilitate the healing of wounds or prevent pressure ulcers. Instead of decreasing suffering, tube feeding can increase risks of aspiration, diarrhea, and local complications at the site of the tube, and may lead to an individual with dementia struggling to remove the device, leading to further problems and poorer quality of life. Concerns about “starving to death” and associated discomfort are usually unfounded, as studies have shown that most dying patients do not experience hunger and are satisfied with small amounts of liquids or food that can be provided. Excellent articles in the February issue of the Journal of the American Medical Association⁴ and in the March issue of the Journal of the American Geriatrics Society⁵ by Brown University professor and AGS member Joan Teno, MD, and coauthors provide an extremely helpful overview of current findings regarding feeding tube insertion and alternatives. In addition to a review of such findings, a discussion with family members should address what the patient and family expect to achieve with the tube feeding or, if the patient is unable to express his or her wishes and has no advance directive, consideration of whether the patient would likely want to have a feeding tube placed, based on an informed discussion.

A final decision should be based on realistic expectations and take into account the patient’s overall condition, including comorbidities. In summary, tube feeding may be appropriate when there is a clear indication for it, a benefit can be expected that outweighs the risks, and it is consistent with the values and beliefs of the patient and family. Too often, unfortunately, a comprehensive consultation with family members does not take place, and the need for a hurried decision based upon limited options may be presented to family. This is particularly likely to occur if a healthcare provider well versed in the issue is not closely involved with the care planning process. Preparing patients and their surrogates to work with their clinicians to make the best possible “in-the-moment” medical decisions, and a good understanding of patient values and needs, has been emphasized.⁶ According to a study presented at the AGS’ Annual Scientific Meeting this past May, hospital and nursing home staff often neglect to explain the risks of feeding tube insertion when discussing the procedure with relatives of patients with dementia who are no longer able to eat. Of the relatives whose family members ultimately had a feeding tube inserted, 11.5% of those in the study reported that facility staff did not meet with them to discuss the procedure beforehand. Another 46.8% said they had a discussion with facility staff prior to making a decision, but that the meeting lasted fewer than 15 minutes. About a third of these relatives said the risks associated with feeding-tube insertion were not discussed, and nearly half said that the hospital caregiver with whom they discussed the procedure “was strongly in favor of (feeding tube) insertion.” Another 13.1% said they “felt pressured to put in a feeding tube.” And nearly one in four relatives whose loved one had a tube inserted said they regretted the use of tube feeding. Clearly, we can play a key role in improving outcomes in this area.

Dr. Spivack is Associate Clinical Professor of Medicine, Columbia University, New York, NY, Consultant in Geriatric Medicine, Greenwich Hospital, Greenwich, CT, and Medical Director of LifeCare, Inc., Westport, CT.

References

1. Mitchell, SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med 2009;361:1529-1538.

2. Rabin RC. Feeding dementia patients with dignity. The New York Times. August 3, 2010:D6.

3. https://www.ahrq.gov/qual/literacy. Accessed August 16, 2010.

4. Teno JM, Mitchell SL, Gozalo PL, et al. Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA 2010;303:544-550.

5. Palecek EJ, Teno JM, Casarett DJ, et al. Comfort feeding only: A proposal to bring clarity to decision-making regarding difficulty with eating for persons with advanced dementia. J Am Geriatr Soc 2010;58:580-584.

6. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Ann Intern Med 2010;153:256-261.