When a person you love is in the final stages of advanced dementia, it’s a day-to-day struggle to provide care while also honoring your own emotional needs. Considering that some 71,000 Americans die with dementia each year, I was interested to learn about a new care option that keeps patients comfortable — and their dignity intact — while allowing the illness to run its natural course.
It’s called comfort feeding (or cheerful hand feeding), and it involves delivering as much food as the patient can safely and easily accept while recognizing that he/she may stop eating before receiving adequate nutrition. Hospice expert Joan M. Teno, MD, MS, associate director of Brown Medical School’s Center for Gerontology and Health Care Research, told me that she coined the term “comfort feeding” three years ago while helping one family decide whether their father, who suffered from advanced dementia, needed a gastric feeding tube.
Few Want Feeding Tubes
“Eighty-six percent of people dying from dementia develop feeding problems,” said Dr. Teno, who recently coauthored a study on the topic in the Journal of the American Geriatrics Society. (In Alzheimer’s disease, this often happens in the end stages, when the illness destroys the region of the brain that controls the motor activities of eating.) Surveys indicate that the vast majority of nursing home residents would rather die than live with a feeding tube, yet about one in five nursing home residents end up with a feeding tube. Why? Because few patients have created advanced directives documenting their wishes about the use of artificial hydration and nutrition.
Comfort feeding provides human contact, maintaining a level of warmth from family, patients and staff. Also, said Dr. Neno, “With comfort feeding, you’re responding to the patient rather than responding to regulatory pressure (on the nursing home) to try to maintain someone’s weight.”
But comfort feeding comes with its own set of challenges. The task requires patience and an ability to provide eating cues to the patient and interpret the patient’s own cues. So it requires much time and attention from family members and other caretakers. It’s emotionally draining — there may be feelings of guilt, since the person with dementia is not likely to receive as much nutrition as he/she would with a feeding tube, which may result in weight loss. That said, Dr. Teno gently explains that the hard truth is, “These people are not going to get better.” She pointed out that this approach prolongs life more than a “do not feed” protocol, which is the course that some families take when the end is near. It is not an edict to stop feeding but rather, she says, “providing nourishment in a safe way.”
How To Make It Happen
It doesn’t require special expertise to feed a person with dementia this way, but it’s not as simple as you might guess — feeders should receive training from a speech therapist to learn safe feeding techniques, such as cueing the patient to swallow, changing a food’s texture to make it easier to consume and recognizing when it’s time to stop.
Dr. Teno told me that since her article was published, she has heard from several hospitals interested in implementing such a program. Legally speaking, so long as a patient has an advance directive stating a wish to avoid artificial means of providing nutrition and/or hydration, or a durable power of attorney has been established so that someone else is empowered to make such decisions, a family may withhold or withdraw a feeding tube and implement comfort feeding.
This is a sad situation to contemplate. It’s best if you can have a discussion about comfort feeding early on if a loved one has been recently diagnosed with Alzheimer’s or another dementia-inducing illness. That way, you can be sure to honor his/her wishes about maintaining dignity in a safe, comfortable way.