Invented for Younger Patients,
Feeding Tube Now Figures
In End-of-Life Debate
A Missed Box on a Living Will
By MARK FRITZ
Staff Reporter of THE WALL STREET JOURNAL
December 8, 2005; Page A1
http://online.wsj.com/article/SB113401176335817094.html
CLEVELAND -- Richard K.C. Wong was recently asked to insert a feeding tube into Lucy McGowan, a 100-year-old stroke victim who was semiconscious, half-paralyzed, sick with pneumonia and addled by a brain infection.
Dr. Wong, a gastroenterologist at the University Hospitals of Cleveland, believed Ms. McGowan was a dubious candidate for forced nutrition. She was on the brink of death. Food wasn't her primary need. "Why is she here?" he wondered.
 The answer lies in the unusual history of the feeding tube, a simple, inexpensive medical product at the center of a growing cultural battle over end-of-life care for the elderly. At this same hospital 26 years ago, two doctors inserted the first modern feeding-and-hydration tube to save a sick infant. One of them dubbed it the "percutaneous endoscopic gastrostomy" nozzle, or PEG. Today, PEGs are most often used on people with late-stage terminal diseases such as Alzheimer's who can no longer eat on their own. About 300,000 people received tubes this year, PEG pioneer Michael Gauderer says, nearly double that of a decade ago. Roughly 75% are 65 years or older, specialists say.
As feeding tubes have shifted far away from their original use -- emergency care for younger patients -- some now argue that failing to use them on the elderly is tantamount to euthanasia. Meanwhile some surgeons, including the two who inserted the first feeding tube, say the technology is overused.
Several studies have found that PEGs don't extend the lives of terminally ill elderly people and are fraught with complications. Yet widening use of feeding tubes has been driven by market forces, the aging population, fear of liability and economic inducements tied to insurance payments.
 The federal government and private insurers typically reimburse nursing homes for patients with feeding tubes more than those without them. It's often easier for overworked nursing homes to use tubes to feed frail, demented patients who can't feed themselves. And religious and right-to-life groups also are fighting to expand the use of PEGs in elderly people nearing death, challenging anyone who would allow these patients to die.
The feeding-tube debate erupted this year with the case of Terri Schiavo, a 41-year-old brain-dead Florida woman. In March, a judge allowed Ms. Schiavo's husband to have the tube removed over her parents' objections. A dispute among Ms. Schiavo's family members about whether to disconnect her PEG tube turned into a nationwide political debate during which even President Bush weighed in, declaring Ms. Schiavo had a right to live.
As the U.S. population ages, battles involving feeding tubes and the elderly are likely to become more commonplace. In a September report, the Bush administration's Council on Bioethics warned that the number of Alzheimer's patients, estimated at 4.5 million, will triple in the next 45 years, creating more ethical dilemmas about life-sustaining measures.
Before the PEG was invented, installing a food tube required major surgery and was generally limited to people with a chance of recovery.
That began to change on June 12, 1979, when Dr. Gauderer, then a pediatrician at the Cleveland hospital, and endoscopist Jeffery Ponsky implanted the first PEG in a 10-week-old child with a swallowing impediment.
The new device was a breakthrough: Doctors simply snaked a rubber plug into the patient's stomach, then clipped on a feeding tube via a small incision in the abdomen. It was removed months later, after the child began eating normally.
Because it required so little surgical slicing and only a mild anesthetic, physicians led by Dr. Ponsky began adapting the device to adults in the early 1980s. Starting with stroke victims, they advanced quickly into other patients with impaired swallowing, including terminal cancer patients and elderly people with dementia. Dr. Ponsky, working with companies including Johnson & Johnson and C.R. Bard Inc., quickly introduced new variations. The price of these devices generally ranges from $200 to $400.
"It spread like wildfire," says Stephen Post, a bioethicist at Case Western Reserve University. "Before 1984, nobody with Alzheimer's was on the PEG." By 1988, the annual number of PEG procedures reimbursed by Medicare, the federal-assistance program for the elderly, had risen to 61,000. By 1995 it was 121,000.
Short Recovery
Hospitals liked the PEG procedure because its short recovery time meant they could discharge patients more quickly. Nursing homes embraced it because it was an inexpensive way to feed people who couldn't do it themselves, particularly the elderly suffering from various forms of dementia.
This expansion troubled some specialists, including Dr. Gauderer. "I've followed very closely where it's gone," says Dr. Gauderer, now chief of pediatric surgery at the Greenville (S.C.) Children's Hospital. "It has gone too far."
Previously, many such patients had been allowed to die naturally. With the feeding tube, doctors faced a difficult new decision. "It's easier to put the PEG in than it is to sit down with the family," says Barbara Daly, a Ph.D. nurse and director of ethics at the Cleveland hospital.
A 1999 study published in the Journal of the American Medical Association underscored critics' concerns. After reviewing all the available literature on artificial stomach feeding, the study found little evidence the PEG prolonged life for most patients suffering from age-related dementia. Nor was there proof it prevented pneumonia or reduced the risk of infection, both major benefits that proponents had touted.
At the time, nearly 34% of severely demented residents of U.S. nursing homes were already living with the PEG, according to a survey by Susan Mitchell, a physician with the Hebrew SeniorLife Institute for Aging Research in Boston. Dr. Mitchell says she has seen no evidence of a slowdown since.
"If you're in a nursing home where a lot of people are PEG fed, that's a poor nursing home," said Thomas Finucane, the author of the JAMA study and chief of geriatrics at Johns Hopkins.
Some say financial incentives are partly to blame. Medicare, which pays the health costs of many elderly people, considers PEG feeding to be skilled nursing, while hand feeding isn't. That means nursing homes get more money "to have a feeding tube than have someone hand fed, which costs them more," says Dr. Mitchell. A nursing assistant making $8 an hour can hand-feed perhaps two people an hour, or hook up 10 feeding tubes in the same amount of time, says James Campbell, geriatrics director of the county-run MetroHealth Medical Center, which runs a nonprofit nursing home in Cleveland.
Elderly PEG patients are a significantly heavier drain on Medicare and Medicaid than those who aren't using the device, according to another study Dr. Mitchell co-wrote in 2003, which was published in the Journal of the American Medical Directors Association. The size of that drain is difficult to quantify because PEG reimbursements are bundled with other elder-care costs.
The nursing-home industry says the PEG boom isn't driven by profits. People on the tube often require additional care that offsets any cost savings, says Sandra Fitzler, clinical policy director for the American Health Care Association. She adds that feeding is a huge challenge for the industry because the average age of its patients is 85, and nearly half suffer from dementia.
Challenging Living Wills
Recently, some religious groups have actively challenged living wills that call for incapacitated patients to die without having a feeding tube put in. One is Agudath Israel of America, a New York-based activist group which has sought on several occasions to use feeding-tube litigation to advance orthodox Jewish religious convictions. Like other religious groups, it has lobbied against withholding hydration and nutrition from the elderly, saying it violates religious teachings about the sanctity of life.
This argument was put to the test with Lee Kahan, an 86-year-old New Yorker who suffers from advanced Alzheimer's and can no longer swallow. In 1998, Ms. Kahan had signed a living will saying she wanted her life sustained only if there was hope for recovery. Her daughter, Joan Simonson, told doctors she didn't want a PEG for her mother because it might prolong her suffering. "She can't speak, she can't move, she can't do anything," says Ms. Simonson, who is 43.
Ms. Kahan's sister, Rose Borenstein, filed a lawsuit saying that, as an Orthodox Jew, Ms. Kahan should have the tube inserted to prolong her life. Agudath Israel supplied Ms. Borenstein with a lawyer, Samuel Abady. In February, New York State Supreme Court Judge Martin E. Ritholtz ordered Ms. Simonson to keep her mother alive as long as medically possible. "We're not interested in any passive or active euthanasia," he told her.
The court reached its decision in part because Ms. Kahan's living will was incomplete: She had not checked off a box stipulating whether she wanted a feeding tube. Ms. Borenstein declined to comment on the case but her lawyer, Mr. Abady, said: "I achieved Rose Borenstein's goals." Last month, when Ms. Kahan stopped breathing, doctors performed a tracheotomy.
Some groups treat the PEG as an issue akin to stem-cell research and abortion. Burke Balch, director of the National Right to Life Committee's Robert Powell Center for Medical Ethics, says the Washington, D.C., pro-life group's interest in end-of-life care is "equivalent" to its concern over abortion.
The Schiavo case spawned scores of statehouse bills that will heighten the debate next year. Lawmakers in dozens of states have sought rule changes that would make it harder to remove feeding tubes. The Right to Life Committee has won sponsors in more than 10 states for legislation requiring courts to presume a mentally incapacitated patient would want to live.
All this is increasing pressure on medical professionals like Dr. Wong, who at times openly challenges PEG referrals. "I have episodes where I'm viewed as an obstructionist," Dr. Wong says. The 43-year-old gastroenterologist estimates that of the thousands of PEGs he has inserted, "at least a third I have had qualms or doubts about."
In March, Dr. Wong encountered 80-year-old Eva Johnson, who was suffering from end-stage Alzheimer's and no longer could swallow. She was "frail, old, totally demented," Dr. Wong recalls.
So Dr. Wong sat down with her son, James Johnson. "I don't know whether a feeding tube is in her best interest," Dr. Wong says he told him. "It's not going to improve her dementia. It's not going to improve the crippling arthritis that had her in a wheelchair."
Dr. Wong talked to Mr. Johnson, 51, about alternatives, such as spoon-feeding the woman sweet potatoes, a favorite food. "He told me [the PEG] was not going to be a miracle," says Mr. Johnson, a counselor at a Cleveland center for abused and neglected children. Mr. Johnson says he told Cleveland's CityView Nursing Home he wanted to spoon-feed his mother. But he says nursing-home officials were "adamant about putting on tube feeding."
CityView administrator Elizabeth Gay declined to comment and referred inquiries to Cincinnati-based CommuniCare Health Services Corp., which runs the facility. Executives at CommuniCare didn't return phone calls. Mr. Johnson says he ultimately agreed to a PEG, which Dr. Wong implanted in May.
Often, Dr. Wong has no apprehension about inserting PEGs. Isaac Hardges, now 28, was shot three times in the back in the parking lot of a Cleveland store in 1994. He lost the use of his legs, and beset by complications, he lost his appetite.
The 6-foot-2, 225-pound teen shriveled to 85 pounds before doctors installed a feeding tube a year later. Mr. Hardges calls the device "a miracle," adding: "I use nutrient shakes, put vegetables in a blender, take a big syringe and I'm able to feed myself."
After Mr. Hardges accidentally dislodged his feeding tube this September, Dr. Wong installed a new PEG in the hospital's dimly lighted gastroenterology lab. Dr. Wong first ran a wire down Mr. Hardges throat and into his stomach. Attached to the other end of the wire was a plastic "bumper" or plug. As another doctor pulled the wire through a one-inch incision in Mr. Hardges belly, Dr. Wong guided the bumper down the patient's throat and up against the incision. Then he clipped on roughly 20 inches of tubing, through which Mr. Hardges is now able to feed himself again. "He's the reason why this device is necessary," Dr. Wong says.
In the case of Lucy McGowan, the 100-year-old Clevelander, Dr. Wong was the gastroenterologist on duty when she was sent to the hospital July 12 to have a PEG procedure. He decided to wait a day before seeing her. "The woman had an active infection," he says. "A feeding tube is not an emergency procedure."
Frederick Harris, the Cleveland internist who referred the woman to Dr. Wong's department, said that before the patient's stroke, "she'd been fully functional. Granted, she was 100. But she was a young 100." One of Ms. McGowan's grandchildren, 51-year-old Greg Jessie, says the family agreed to a PEG because "she had to have a way of being able to eat." Despite her fragile hold on life, he says, four generations of family couldn't fathom life without her.
The next morning, Dr. Wong went looking for the woman. It turned out she had died the night before of complications resulting from her stroke, pneumonia and a brain disease that causes delirium. "If we were being hyperefficient, we might have put one in," Dr. Wong says of the PEG.
Write to Mark Fritz at mark.fritz@wsj.com
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