The Cost of Dying: Simple act of feeding poses painful choices

A small plastic tube is all that stands between survival and starvation.

The benefits of a feeding tube — helping elders who have forgotten how to eat — seem so obvious that it is used on one-third of demented nursing home residents, contributing to a growing device market worth $1.64 billion annually.

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 gastrostomy (PEG), is the latest installment of “Cost of Dying,” a series exploring 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?

Blessing, then a curse

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.”

Quickly adopted

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.

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.”

Awful choices

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.”

Tube feeding constitutes ordinary care at Catholic hospitals. “People with end stage dementia still possess human dignity. And that dignity must be respected,” said Gerald Coleman, vice president of corporate ethics at Catholic Daughters of Charity Health System, which manages San Jose’s O’Conner Hospital and Gilroy’s St. Louise Hospital and others.

The Orthodox Jewish viewpoint also asserts that food and fluids must be offered to all patients, regardless of the statistical chance of recovering, according to Rabbi Dr. Yizhak Kupfer of Brooklyn’s National Institute of Judaism and Medicine.

Indeed, few of us are ready to say goodbye. And we’re not sure our elders are, either.

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.”

Attitudes are changing, said Bill Fisher, head of the Northern California chapter of the Alzheimer’s Association.

When Fisher’s grandmother had Alzheimer’s four decades ago, it was determined she would be fed artificially. “It was an automatic thing, nobody asked, nobody talked about it,” he said.

But when his mother-in-law sickened with the same disease, the family made it very clear that “we absolutely did not want a feeding tube,” Fisher said.

“It is still a difficult issue — no question about it — but some families are wrestling with it ahead of time,” he said.

Startling data

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 Washington, D.C. 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.”

‘Do everything’

Yet thousands of patients still spend their final days — and even months or years — attached to tubes.

Why?

Families may not understand the implications of tube feeding, due to poor communication with doctors. Many patients don’t prepare advance directives, which can specify “no artificial hydration and nutrition,” so their distressed families urge doctors to “do everything.”

“We have a tough time letting go — rightly so,” Teno said. “Think about what we’re asking people to do.”

Doctors may not want to let go, either. They’re trained to heal. They’re paid more to rescue than to talk about death. And those conversations are awful.

“It’s easier to recommend a nonbeneficial procedure than to confront difficult end-of-life issues,” geriatrician Dr. William Plonk Jr. of the University of Virginia Health System wrote in a 2005 journal article.

Financial incentives encourage hospitals to overuse the procedure, experts say. Because it is costly to keep patients, hospitals seek to quickly stabilize and return patients to a nursing home. That means ensuring they are getting nutrition — and the most efficient way often is through a feeding tube.

Nursing homes have their own reasons to favor tubes. Many lack the staffing for time-consuming hand feeding. And another incentive promotes tube use: Its costs are considered “skilled nursing” care that Medicare generously reimburses. Moreover, nursing homes risk stiff penalties if regulators believe their residents are malnourished.

All these powerful reasons — emotional, ethical, practical, financial and regulatory — make it easy to lose sight of what’s best for the patient, experts say.

“Not eating at the end of life is a normal part of the dying process,” said Foote, the medical director at Windsor Gardens in Salinas. “We have forgotten that.”

Contact Lisa M. Krieger at 650-492-4098.