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Simple act of feeding poses painful choices

By Lisa M. Krieger Published: November 12, 2012

A 2011 forecast saw the aging population generating 5.9 percent annual revenue growth in the feeding tube industry through 2018. The global feeding device market was estimated at $1.6 billion in 2011 — and will reach $2.4 billion in 2018, according to a report by analysts at Transparency Market Research.

“I never even thought about dementia,” 40 years ago, inventor Ponsky said recently.

“It was just a simple way to make a procedure — that was already done — much easier to do.”

The logic behind the use of feeding tubes seems inescapable. Our loved ones fed us; we feed them. We imagine our own hunger pangs or conjure up images of famine. We honor our elders; at their bedside, we may be reminded of the Biblical plea in Psalms: “Do not cast me off in old age. When my strength fails, do not forsake me.”

Doctors recommended a tube for Cole's mother, and the family agreed. “Our choice was to put in the tube and allow her to continue living — or. give no food or hydration while she died,” Cole recalled. When they asked her mother if she wanted the tube, “while not giving a resounding yes, she did not say, ‘No.' ”

But the disease progressed, and her mother became unresponsive. Pillows and a seat belt held her up in her wheelchair, but her head drooped.

The family withdrew the tube after a “no artificial nutrition” clause was found in the will that her mother had signed years earlier. Although Cole strongly believes they did the right thing, regrets remain.

Siblings were deeply divided; a brother insisted that withdrawing food was, in effect, murder.

“I am still haunted by having had a hand in her death,” Cole said. “I sat by her bedside for 13 days while she starved to death wondering ‘What are you thinking, Mother? Are you happy that you will finally be freed from this horrible entrapment in a miserable and meaningless life?' Or are you wondering, ‘Why is my daughter doing this to me?' ”

Paul Barrett of Moraga, a retired pilot, sees no benefit to artificially prolonging his ailing wife's life, a view she shared in her advance health care directive.

Diana, a 65-year-old former flight attendant who loved to make lasagna and caprese salad, suffers from Alzheimer's disease. Paul often helps cut her food, steady her soup spoon, and guide a drink to her lips. The day will come, he knows, when it is time to move to pureed foods and hand-feeding.

But no tube.

“This is a fatal disease — and to try to keep her alive, knowing I can't save her anyway, doesn't seem to make sense to me,” he said. “It is emotionally tough, of course. But the logical part of me knows it is absurd to try to keep her alive artificially.

”If the day comes when she can no longer swallow, just keep her comfortable in hospice,“ he said. ”Let her go.“

For two decades, no one checked to see what feeding tubes were actually accomplishing.

Short-term results looked rosy. But little attention was paid to long-term consequences for the frail and demented elderly.

”Medical research is dominated by research on the new: new tests, new treatments, new disorders and new fads. But above all, it's about new markets,“ according to Dr. H. Gilbert Welch, professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice.

The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states, according to the only national study of the practice. It found that the 2001 average rate nationwide was 54 per 1,000 — but as low as 2.1 in Utah and as high as 114 in Louisiana. Racial minorities were much more likely to get tubes than whites. More than two-thirds of all insertions were done when a patient was hospitalized for pneumonia or some other illness.

When isolated problems with feeding tubes began to worry experts, they took a closer look and made a disturbing discovery.

In a seminal 1999 study, Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolonged survival of aged, demented nursing home patients. Nor do they prevent pneumonia, improve function or comfort dementia patients.

Subsequent studies were also startling. Using tubes often requires restraints — such as sedatives, or tying patients' wrists to their beds. And there are complications: Each insertion is associated with 3.5 emergency room visits per year, costing Medicare an average of $1,000 per visit.

”Intuitively, it seems to make sense: If you don't eat, you will die,“ said Lipman, the Veterans Affairs Medical Center physician. ”But if we look at the total picture — complications, without improving the quality of life — what have we accomplished?“

A growing body of research suggests wide overuse of tubes in other patients, such as those with some types of stroke, muscular dystrophy and some cancers.

Tube use also robs patients of human contact — although hand-held ”comfort feeding“ is slow and messy, it is also intensely intimate. And it may provide all the calories a frail and dwindling elder needs.

Almost all dying patients, even those who are hand-fed, lose their interest in eating and drinking; this is the body's signal that death is coming, according to palliative care providers. If food is not artificially provided, patients typically die within two weeks, although exceptions are common. Lack of food triggers a biochemical process called ketosis, which actually blunts hunger and eases discomfort due to the release of natural morphine-like agents.

”We are putting in feeding tubes much too quickly,“ concluded Dr. Joan M. Teno of the Center for Gerontology and Health Care Research at Brown University Medical School.

”We're thinking: It's nourishment,“ said Teno, author of some of the field's most influential studies. ”We don't think of the myriad reasons they cause problems.“

Distributed by MCT Information Services

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