Hand Feeding Instead of Tube Feeding Recommended for People with Advanced Dementia
I spent much of yesterday afternoon at a doctor’s appointment with an elderly relative who has a percutaneous endoscopic gastrostomy (PEG) tube inserted in his stomach. My relative, who is showing some mild cognitive impairment but who doesn’t have dementia, had this feeding tube inserted when he lost his ability to swallow during a 48-day hospitalization. The tube allows him to receive both nutrition and medications directly into his stomach, thus avoiding aspiration.
I had not really thought much about the various issues regarding feeding tubes until my elder had one inserted, but I can see why the American Geriatric Society expresses concerns in its new guidelines about using these tubes in people who have advanced dementia. People often permanently lose their ability to swallow as dementia advances, as I learned while caregiving for my mother (who had Alzheimer’s). In fact, a landmark study found that more than 85 percent of a cohort of individuals with advanced dementia experienced eating difficulties over an 18-month period.
Yesterday’s trip to the doctor was because my relative’s PEG tube had a blockage; thus, it was not allowing food or medication to enter his body. It was a relatively quick fix, but required an ambulance ride to take him to the doctor’s appointment, which could be especially disconcerting to a person with dementia.
Other issues that have arisen due to my relative’s feeding tube illustrate additional reasons why people with Alzheimer’s would experience difficulty with this feeding method. For instance, many people with Alzheimer’s experience sundowning, in which they tend to want to get up and wander at night. My relative, who at this point is extremely weak, fell as he tried to get out of bed unaided during the middle of the night. After making sure my relative had not broken any bones, the rehab facility nursing staff made the decision to send my relative to the emergency room to make sure that the feeding tube hadn’t become displaced. Again, this trip would have been very disorienting for a person with dementia.
Also, I could definitely see that it would be difficult for a person with Alzheimer’s disease to leave a feeding tube alone. I’m pretty sure that my mother would have tried to rip it out if she had to have one and she would have needed some type of restraint -- whether physical or medication -- to keep this from happening.
The American Geriatrics Society recommends that instead of inserting feeding tubes, caregivers should request that their loved ones with advanced dementia receive careful hand feeding. Research has found that this type of feeding method is equal to tube feeding as far as functional status and comfort. Furthermore, careful hand feeding is less likely to cause agitation as well as the need for physical and chemical restraints, all of which tend to increase with tube feeding. Additionally, tube feeding has been found to lead to medical complications as well as the development of new pressure ulcers.
These guidelines underscore the importance of caregivers knowing the wishes of a loved one as it relates to feeding tubes. These wishes, which may be communicated to caregivers through an advanced directive or previously stated preferences, should serve as the foundation for all health care decisions to be made. Mom did not live long enough for us to have to have the discussion about a feeding tube, but we knew that her wishes were. This current situation is different, since we expect that with intensive speech therapy, my elderly relative will be able to regain his ability to swallow liquid and food in the very near future, thus allowing the PEG tube to be removed.
While it’s important to get the feedback of medical personnel when making this type of decision, caregivers need to avoid being pressured into making a snap decision related to feeding tubes. “Institutions such as hospitals, nursing homes, and other care settings should promote choice, endorse shared and informed decision-making, and honor preferences regarding tube feeding,” the guidelines state. “They should not impose obligations or exert pressure on individuals or providers to institute tube feeding.”
Primary Source for This Sharepost:
American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. (2014). American Geriatrics Society feeding tubes in advanced dementia position statement. Journal of the American Geriatrics Society.