She could still respond to music, if a helper wheeled her to the Sunday concert at the Hebrew Rehabilitation Center in Boston, but she spent most of her time in bed. Sometimes she recognized family members; often she didn’t. She couldn’t say more than a few words. She had trouble swallowing.
Last year, her doctor pointed out that she was losing weight and that a feeding tube, surgically inserted through her abdominal wall, might help her regain a few pounds.
Her son James, who served as her surrogate decision maker, responded the way a growing number of family members do: He said no. The proportion of nursing home residents with advanced dementia who receive a feeding tube has dropped more than 50 percent, a new national study has found.
The researchers, analyzing federal nursing home data, reported that in 2000, nearly 12 percent of patients with this terminal condition had feeding tubes inserted within a year of developing eating problems. By 2014, the rate had fallen to less than six percent.
“It’s getting much less controversial” to decline a tube and rely on hand feeding, said Dr. Susan Mitchell, a geriatrician and senior scientist at the Harvard-affiliated Hebrew SeniorLife Institute for Aging Research, “This is becoming the prevailing wisdom.”
Dr. Mitchell has had a lot to do with that shift. As a young physician training in nursing homes, she wondered whether feeding tubes actually helped these bed-bound elders. At the time, roughly a third of cognitively impaired nursing home residents were tube-fed.
She and a cadre of researchers, primarily from Harvard and Brown universities, have been methodically reporting their findings for 20 years, demonstrating in one article after another the drawbacks of artificial feeding for people in the final stages of dementia.
Change can come slowly in medicine, but it does come. In 2013, the American Geriatrics Society updated its recommendations against feeding tubes for older patients with advanced dementia. The Choosing Wisely campaign, which publishes lists of procedures and tests that patients and families should question, and the Alzheimer’s Association have taken similar positions.
Now, families and physicians seem to have gotten the sorrowful message: Dementia is a terminal disease. Eating and swallowing problems eventually plague almost everyone who has it. Feeding tubes don’t help. In fact, they can make matters worse.
Consider, first, how ill these patients are. Advanced dementia, as Dr. Mitchell and her colleagues define it, brings such profound memory loss that people don’t recognize family. They can’t speak more than five words. They’re incontinent. Sometimes they can’t turn over in bed unaided. “They’re dependent on others for all their day-to-day functions,” Dr. Mitchell said.
Even if an aide or relative patiently feeds them, “they may not know what to do with the food in their mouths.” When they try to swallow, they can aspirate food particles into their lungs and develop pneumonia. “For most people, that’s a very poor quality of life,” Dr. Mitchell said.
Feeding is such a primal activity, the first thing we do when someone is born and one of the last sources of pleasure as death approaches. Naturally, families can find it difficult to refuse a fairly minor surgical procedure that provides nutrition.
But a person no longer able to understand why a gastroenterologist is opening a small hole in her belly may find the insertion of a tube confusing and traumatic. The mush that flows through eliminates the taste of food and the social interaction of hand feeding.
Almost 20 percent of the time, the tube is blocked or dislodged within a year, requiring hospitalization. Dementia patients may also try to pull it out, leading to physical or chemical restraints (read: drugs).
Feeding tubes are also associated with an increased risk of pressure ulcers or bedsores, perhaps because they encourage inactivity or cause diarrhea; the ulcers heal more slowly than in people without tubes.
Perhaps the trade-off would be worth it to some families (since these patients can no longer make decisions themselves) if a feeding tube prolonged life. For others, that would be a good reason to refuse one.
As it turns out, though, feeding tubes don’t keep advanced dementia patients alive longer. Several studies led by Dr. Joan Teno, a geriatrician at the University of Washington who has often collaborated with Dr. Mitchell, show that they make no significant difference. After receiving a feeding tube, patients with advanced dementia lived a median of 165 days, and two-thirds died within a year.
Older adults nearing death still do receive feeding tubes, sometimes because families insist, sometimes because health care providers don’t offer enough information to help them decide. Stark racial differences persist: 3 percent of white nursing home residents with dementia had feeding tubes inserted in 2014, compared with 17.5 percent of black residents.
Feeding tubes remain more popular in certain kinds of nursing homes, too. For-profit nursing homes use them more than nonprofits, Dr. Mitchell’s research has shown, and bigger facilities more than small ones. In New England, fewer than 2 percent of residents are tube-fed. In parts of the South, the rate can run up to 10 times higher.
If you see such practices as indicators of a more aggressive approach to end-of-life care in general (Dr. Mitchell does), then you wonder if health care professionals spend more time talking to white families about their options. You wonder if higher Medicare reimbursement for tube-fed patients (and the labor costs of hand feeding) make nursing homes more apt to recommend tubes.
But more and more, you encounter people like the Jewell.
Joan Jewell had worked as a nurse in upstate New York and had cared for her husband as he died of Alzheimer’s disease. James Jewell, whom she encouraged to study medicine, is an internist at the nursing home where she lived.
Years before, when his mother could still contemplate such matters, “we had the what-if discussions,” Dr. Jewell told me.
Mrs. Jewell was clear. “She subscribed to the idea that quality of life was more important than being kept alive at all costs,” her son said. “And being able to do things for herself was part of her definition of quality of life.”
Despite her weight loss, then, he declined medical intervention. In February, Mrs. Jewell began refusing food altogether and soon slipped into a coma. Dr. Jewell and his children were with her when she died, at 89.
(Editor’s Note: Some photos added to article by Vaishnavas CARE Editor.)