Simple act of feeding poses painful choices

Except it does little to help. And it can hurt.

Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying.

The tale of the feeding tube, known as percutaneous endoscopic gastrotomy (PEG), is offers a window on how our technological ability to stave off death creates dilemmas unimaginable decades ago, when we died younger and more quickly.

Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion. So the easy availability of feeding tubes forces a wrenching choice upon families: Do we say yes, condemning a loved one to dependency on a small plastic tube in their stomach? Or do we say no, consenting to their death?

Tubes are useful as a nutritional tool for patients struggling with a critical illness, such as Lou Gehrig's disease, or recovering from stroke, cancer or anorexia.

But if no turnaround is in sight — particularly in elders with progressive neurological illness — they can be a dreadful mistake, medical researchers now say.

For families praying for a reversal, or just the gift of a few more days, the decision to insert a tube into the stomach can initially feel like the right choice. The device helped sustain Fran Cole's beloved mother when Parkinson's disease took away her ability to swallow.

“I think my mother was enjoying life at the time that her tube was put in,” said Cole, of San Jose. “She smiled and enjoyed our presence. She was not in pain. She just had extreme difficulty with word retrieval, and a very poor short-term memory.”

But four years later, the blessing became a curse. Her mother had declined severely, even though her feeding tube kept her going.

“She was trapped, unable to make the choice to die,” Cole recalled.

The device joins a burgeoning array of sophisticated technologies that, once invented, are hard to resist. Heart valve replacements for frail octogenarians? Dialysis to help aged kidneys? Anti-cancer drugs costing tens of thousands of dollars that extend life for mere months with deeply sickening side effects?

The cost of such end-of-life interventions, coupled with a tidal wave of elderly baby boomers, could result in an unsustainable economic burden that might bankrupt Medicare and weaken the American economy, some experts say. Medicare costs are already expected to reach $830 billion a year by 2017. About one-quarter — or $208 billion — will be spent on people in the final year of their lives.

There's a personal price, as well, for both the patients and their families.

“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of the Salinas-based nursing home Windsor Gardens Rehabilitation Center. “But we sure aren't doing them any great favors.”

PEG tubes initially were designed for severely disabled babies.

In a remarkable 1979 experiment, Drs. Jeffrey Ponsky and Michael Gauderer conceived of creating a small tunnel above a baby's belly button, leading directly to the stomach. Complicated and risky surgery wasn't necessary. And tube placement, guided by a viewing tube called an endoscope, was very accurate.

“It is simple, safe and rapid,” reported Ponsky, now chief surgeon and chairman of the Department of Surgery at Case Western Reserve University School of Medicine in Cleveland.

Almost immediately, the medical community embraced the tool, then applied it to other kinds of patients: victims of stroke, trauma, cancer, Parkinson's disease, neurodegenerative diseases and advanced dementia.

“With this technique, it became easier — you avoided the (operating room), you could do it in the endoscopic suite, and it was much faster. You didn't have to do deep anesthesia or face surgical complications,” said Dr. Timothy O. Lipman, chief of the GI-Hepatology-Nutrition Section of the Veterans Affairs Medical Center in Washington, D.C.

The surgery was also lucrative: Medicare pays doctors $225 to $1,047 to place the tube and pays hospitals $591 to $3,361.

For nursing homes, it eased the workload of hand feeding.

As the market expanded, so did innovations in device design, materials, pumps and placement techniques. Each improvement boosted PEG popularity.

Initially, no companies were interested in manufacturing the tube, predicting little demand. Ponsky finally persuaded a company, American Endoscopy, to produce it. Now a dozen large corporations, such as Abbott and Nestle, dominate the market.

Some manufacturers lease the feeding apparatus at low cost to hospitals and nursing homes in exchange for a commitment to use only the manufacturers' food and supplies.

Major marketing budgets boost business. “PEG Kits are even more convenient to use than before,” boasts manufacturer Kimberly-Clark.

For people who can still make their own decisions, feeding tubes buy precious time.

Writer and cancer patient Christopher Hitchens kept writing at his legendary pace, typing past midnight on a laptop on his bedside table to finish articles for Vanity Fair and other major publications. Prize-winning film critic Roger Ebert, a cancer patient who attends major film festivals around the world, has blogged about his tube.

“My body may be ready for the Texas Chainsaw Museum,” Ebert wrote, “but I'm here, and it's a beautiful day.”

The surge in use is mostly in the over-65 group. Within seven years of the tube's introduction, annual insertion rates in Medicare patients doubled, from 61,000 to 123,000 by 1995.