Images of death haunt feeding decision

It's difficult for many to imagine withholding food as a peaceful way to pass and not a cruel starvation.

Source: www.uscuh.com [Times art: Jeff Goertzen]

TAMPA - Harold Ridgewell thinks about the feeding tube that keeps Terri Schiavo alive and feels sick.

Sicker than he already is after four heart attacks, three strokes and the slow failing of his lungs. A feeding tube represents everything he does not want. No CPR. No ventilator. No feeding tube.

"It depends on your outlook," said the Tampa resident, 82. "I've had a really good life."

Twenty miles east in Riverview, Peggy Gibson will care for her husband, Mel, 74, until the end. The multiple sclerosis has almost won. Back when he could talk, he said no to a ventilator. But for three years, a feeding tube has dripped liquid nutrition into his stomach each day.

And Mrs. Gibson wouldn't dream of taking it out.

"I know he is slowly going to die from this MS thing," she said, "but I don't want him to starve to death."

Americans are debating whether the feeding tube of brain-damaged Terri Schiavo should be removed.

But in their own lives, thousands of people will one day confront the same question. Most likely, doctors say, it will be caring for someone with a progressive illness, such as cancer or dementia.

And as these families learn to navigate the terrain of lingering death, they will be asked to make decisions. CPR? Ventilator? Feeding tube? It is that last one that makes many agonize.

It is the hardest choice.

"Nutrition has love associated with it - mother and grandmother and cookies and milk," said Charles Mueller, clinical researcher and nutritionist with Cornell University's Weill Medical College. "Ventilators are not seen the same way. You reward with food. You punish with food. You show love with food."

Social worker Sara Williams, who counsels patients at LifePath Hospice in Tampa, said many families don't see feeding tubes as life support.

"They're lying peacefully in bed with a tube in their stomach," she said. "It doesn't seem that invasive. It doesn't seem that horrible."

Just last week, Williams counseled a man whose wife has Alzheimer's disease and a feeding tube. To resuscitate her if her heart stops would be against the will of God, he said. But to remove her feeding tube would be the same.

And yet, to stop eating is a natural end for those whose bodies are failing, say doctors who treat them. Until a few decades ago, people who could no longer eat simply died. Feeding tubes were not an option.

"We assume these people . . . do not suffer," said Dr. Lodovico Balducci, program leader of the Senior Adult Oncology Program at H. Lee Moffitt Cancer Center and Research Institute. "They do not experience pain related to lack of feeding. I think it's a common misperception that dying by starvation is the worst type of death."

A healthy person suddenly deprived of food and water would suffer horribly, said Dr. Neil Wenger, a professor at the David Geffen School of Medicine at the University of California at Los Angeles and chairman of the ethics committee at UCLA Medical Center. Removing food from someone who has severe brain damage or failing organs isn't the same.

"There's no evidence, medically, that people in a vegetative state suffer by becoming dehydrated," he said. "They die quietly, without any apparent discomfort whatsoever."

Researchers have asked terminal patients who are still alert about pain. In a recent New England Journal of Medicine study, dying patients who voluntarily stopped eating experienced a "good death," as viewed by the nurses caring for them.

About 344,000 U.S. residents now use feeding tubes in their homes, according to the American Society for Parenteral and Enteral Nutrition. A 1995 study said about 120,000 long-term care patients were using them, Mueller said, and the number has probably increased since.

Once a feeding tube is removed, a person's systems gradually begin to shut down, said Dr. Ronald Schonwetter, professor and director of geriatric medicine at the University of South Florida College of Medicine.

"The patient would typically get sleepier and sleepier, more lethargic, until they are in a coma," said Schonwetter, who also is chief medical officer for LifePath Hospice.

As the circulatory system begins to slow, the patient's hands and feet may look blue as blood diverts to the vital organs, Schonwetter said. The kidneys begin to shut down.

Near the end, the patient may stop breathing for short periods, then breathe very rapidly for a time. The patient's lips and mouth dry out, but caregivers keep them moist.

It generally takes a person a week or two to die. It could take as little as 48 hours or as long as three weeks, Schonwetter said.

Patients are more likely than family members to say they don't want a feeding tube. Mueller, who also serves on the National Board of Nutrition Support Certification, said he's never seen a dying patient "in distress" from not being fed. But about three-quarters of the family members he sees have a visceral reaction.

"Families react as if they are being starved, personally," he said. "They're horrified."

Williams estimated that up to 20 percent of LifePath's family members struggle over feeding tubes.

When Mary Kaplan's mother stopped eating, her father found the decision difficult as well. Kaplan, a board member of the Gulf Coast Chapter of the Alzheimer's Association, said her mother had spoken about her wishes.

She remained peaceful through her last two weeks, as her children and grandchildren gathered at her bedside, singing her the lullabies she once crooned to them.

Even so, Kaplan said, "my father, who's a physician, did have a very hard time. . . . He kept bringing in liquid vitamins and trying to get her to take them. It was him saying he had to do everything."

Family members often change their minds after talking with doctors. But when they don't, Mueller said, doctors need to respect those decisions.

Feeding tube patients include people with terminal disease, those in comas or coma-like states, people using them temporarily while recovering from surgeries or mild strokes, as well as people using them permanently after recovering from mouth or throat cancers, digestive disorders or other conditions.

But it is around the sickest patients that controversy brews. The numbers are too high for Dr. Susan L. Mitchell, assistant professor at Harvard Medical School and a geriatrician at Hebrew Rehabilitation Center for Aged.

Nearly 34 percent of nursing home patients with dementia are using feeding tubes, according to a recent study by Mitchell and others. In Florida, the number is 40 percent, one of the highest in the nation.

Studies have shown that tubes have so many complications, such as infection, they don't prolong the lives of dementia patients. And they sometimes cascade to other events: Patients are restrained because they try to remove the tubes, then sedated because of the restraints.

"If you can sit down, and present both the risks and the benefits, people become much less conflicted," Mitchell said.

Peggy Gibson has no doubts. She has heard what the doctors say about suffering and comfort. But she also says that her husband of 49 years - "the original Mel Gibson" - still recognizes her, can still blink once for yes and twice for no.

When Gibson, a former electrician, got the feeding tube, he was still able to talk. The couple joked about what she was feeding him.

They never talked then about whether he would ever want it removed.

"It would be awfully hard for me to feel that he was not suffering if they took sustenance away from him," she said.

She thinks Mrs. Schiavo, who doctors say has been in a vegetative state for 13 years, should keep her feeding tube as well.

"She's not really on a life-sustaining machine," she said. "She's being fed. That's nutrition."

Besides, Peggy Gibson made a promise.

"I want to stay with him. That's what I told him I would do," she said. "He would take care of me, and I'm going to take care of him."

In Tampa, Harold Ridgewell is just as determined. He is a veteran of three wars, and he has seen a lot of death. He is ready.

On the couch nearby sits the violin his arthritic fingers can no longer play, keeping company with a banjo and a mandolin. The box that sorts his pills - 10 a day - sits next to him. And beside the blanket-draped recliner where he spends most of his days is the white notebook with his living will.

Ridgewell has had to confront such questions before. Seven years ago, his son, Fred, spent a few weeks on a ventilator as he died of a brain tumor. Ridgewell wanted to just let him go.

The following year, Ridgewell's wife, Phyllis, went in for bypass surgery and never came out. Doctors asked if he wanted to keep her on life support.

"I pulled the plug myself," he said.

He is determined to avoid such a fate. He keeps an extra living will notebook next to the TV, just to be sure.

"I know I don't have a lot longer to go," he said. "My lungs are gone. I'll just fade away."

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