Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: MONDAY, March 5, 1990 TAG: 9003052339
SECTION: VIRGINIA PAGE: A-6 EDITION: METRO
SOURCE: CHARLES HITE MEDICAL WRITER
DATELINE: LENGTH: Long
Five weeks in the intensive care unit on a breathing machine have pushed him to the limit. He picks up his clipboard, scrawls a note and hands it to a nurse.
"I'm not getting off the ventilator so what's the hold-up?" the note says. "I want the surgery. I want answers today by 3 p.m. If not, I'm going to get my brothers over here to talk to the doctors."
Marilyn Martin, the nurse who takes the note, understands Scott's frustration. Since becoming an ICU patient, Scott, 46, has endured one setback after another. Every time he makes progress toward breathing on his own, he has what the nurses have come to call "an episode."
Scott gets short of breath. His heart races. His blood pressure gets so high that it could cause a stroke. He gets wild-eyed and starts thrashing his arms. Nurses have to manually pump more oxygen into his lungs. He's given an injection of powerful sedatives to calm down. When he arrived on the unit, Scott was so agitated that he had to be paralyzed.
Taking care of `weaners'
The ICU staff has a name for patients like Scott: weaners. They are some of the sickest patients in the hospital, people who are put on a breathing machine to get through a medical crisis. But for various reasons, they become stuck on the machine that ventilates their lungs. It's up to the doctors and nurses to figure out a way to "wean" them from their dependency.
Weaners tend to stay in the hospital for weeks, even months. They often have several serious medical ailments that must be treated along with their breathing problem. And they are some of the most difficult patients to care for.
Most intensive care nurses don't like weaners because they want the challenge of treating critically ill patients, says Priscilla Merrill, head nurse on the medical intensive care unit at UVa. Critical care nurses want patients who respond to their care and get better.
Weaners aren't critically ill, but they demand an awful lot of routine attention. They continually have to have their airway tubes cleaned or suctioned. Ideally, Merrill says, chronic ventilator-dependent patients could be sent to a special unit to receive care. But Merrill says it would be impossible to find nurses who would want to staff such a unit.
"I wouldn't want to work there," ICU nurse Deb Carpenter says. "When we get filled up with those kinds of patients, we all hate it. Everyone gets sick of them. I hate to say it, but it's no fun. When you are really doing critical-care nursing, it is fun. It's a challenge. You see if you can get the patient better."
Donald Scott is not getting better and that frustrates not only the medical team but Scott himself. He had expected to be hospitalized, but not in an intensive care unit. He was due to have bypass surgery to correct badly blocked vessels supplying blood to his kidneys and legs.
The surgery, Scott thought, would correct the terrifying shortness-of-breath episodes that had sent him to the hospital for tests in the first place.
Adding to the frustration is Scott's age. At 46, Scott is seen by the ICU staff as a relatively young man in the prime of life. Here's a man who until a few weeks ago was working with a paving company in Staunton. He was a devoted father to 16- and 11-year-old daughters, an active man who had once played softball and football and had since taken up golf.
On top of that, he is a nice guy. He's the kind of patient who writes notes to nurses apologizing for being so much trouble. He smiles a lot. He always holds his wife's hand when she comes for a visit. He's a handsome guy, sturdy and muscular, with a gray streak in his hair and a silver, neatly trimmed beard. The nurses sometimes tease him and call him Kenny Rogers.
So when ICU nurse Marilyn Martin reads Scott's note, she knows things must really be eating at him.
She was there the day he arrived on the unit, hanging by a thread and gasping for breath. She was there a couple of days later when the cuff that makes a seal on his airway tube broke, causing an emergency insertion of another breathing tube. She was there the morning he kept pointing at his head to tell her something was wrong. She finally held up a finger in front of his face and discovered he couldn't see it. Scott's blindness was only fleeting - the doctors never figured out what caused it - but it terrified him.
Martin also has witnessed Scott's battles with the breathing machine: The first time he got up and walked, the first time the settings on the ventilator were adjusted to test how long he could breathe on his own.
Scott has been through every adjustment that can be made to the breathing machine. At times it is set on IMV (intermittent mandatory ventilation): The machine pushes air into his lungs a fixed number of times per minute but he controls the amount of air taken into his lungs.
Sometimes it is set for pressure support: A preset volume of air is pushed into his lungs when he inhales. When he is sickest, the machine is set on pressure control: A preset volume is pushed in his lungs at a fixed rate per minute. These breaths aren't synchronized with his own respirations and sometimes cause him to feel "locked-out" and unable to breathe.
When Scott is at his best, the machine is set on CPAP, or continuous positive airway pressure: When he exhales, the machine forces him to breathe out a higher pressure and opens up the air sacs in his lungs.
The doctors continually tinker with the settings, sometimes adjusting the percentage of oxygen in the air Scott inhales. Yet every time Scott improves, another "episode" knocks him on his back.
The ICU doctors suspected Scott would be a tough wean. The horribly blocked arteries to his kidneys and legs have resulted in high blood pressure and created the likelihood that his kidneys will be damaged or destroyed. On top of that, the cloudy area on Scott's chest X-rays that surgeons had thought was pneumonia now appears to be something more sinister. The doctors believe Scott has bullous disease, small pockets of essentially dead lung tissue.
Surgery, of course, could take care of each problem. But with Scott still dependent on a breathing machine, doctors are reluctant to suggest an operation for either condition. They aren't sure his body can take the trauma.
`ICU psychosis'
Scott, though, has made up his mind. He's tired of the setbacks. He wants to go ahead with the bypass surgery that originally had been planned. He's convinced, his wife says, that the surgery will make him better.
"One day goes into another and into another," Betsy Scott says. "The first couple of weeks he was here, we knew he was too weak for surgery. Now he says he's ready. And anything he decides to do, he does it."
Two days later, Scott has renal bypass surgery. It doesn't work. The grafts to his kidneys become clotted. The blood flow to his kidneys can't be maintained by the bypass. For the rest of his life, Donald Scott will have to be on dialysis.
For a couple of days, Scott has "ICU psychosis." Simply put, he freaks out.
Scott is paranoid and combative. He flails his arms when nurses try to get near him to suction his breathing tube. He doesn't seem to know where he is. He doesn't recognize his wife and won't let her hold his hand.
Scott gets so bad that doctors restrain him and give him a powerful drug that makes him placid and sleepy.
"I think he's just reached his breaking point after more than five weeks of this," says Rich Mahr, the ICU intern taking care of Scott.
After three days, Scott "is back to his old self," several nurses say. At least he improves mentally. Physically, the surgery has caused a few lingering problems.
Shortly after the surgery, doctors discover that one of his lungs has partially collapsed. A chest tube has to be inserted to vent the air that is causing the collapse. As a result, his respiratory status worsens.
Scott also has a high fever. He's gotten an infection from the tube in his chest that's used to tether him to the dialysis machine.
And he's having trouble getting nutrition. He choked on the feeding tube in his nose and it was withdrawn temporarily.
But Scott is determined to get on with his long struggle to get off the breathing machine. Two weeks after his unsuccessful surgery, Scott takes his first wobbly steps from his bed to a nearby chair. Soon, he leads an entourage around the ICU as he makes twice-a-day walks: Nurses or aides hold his arms on either side while a respiratory therapist follows, holding a portable oxygen tank.
"I think he's accepted this for now," Betsy Scott says of her husband's daily battle to rid himself of machine that now gives him life. The doctors told him, she says, that they didn't know how long it might take for Scott to win the battle. But Donald Scott set a goal for himself. He wants to be home by Christmas.
He misses that goal, but not by much. Just after New Year's, he's strong enough to get off the ventilator. A week later, he walks out of the hospital.
About the time Donald Scott was demanding to have surgery, Joseph Marvin was begging to go home, even if it meant taking the breathing machine with him.
Marvin, 78, had asked a hospital chaplain to buy him a pair of pants so he would have something to wear when he left. He even specified the color: tan. Later, he told one of the nurses he would pay her if she would just call the Waynesboro Rescue Squad and have someone come and haul him away.
Joe Marvin had been on the medical ICU three weeks longer than Scott. He had been a patient in the hospital nearly two months before being transferred to the unit.
Marvin arrived on the unit with the odds stacked against him.
First, he had a dismal medical history: heart disease, diabetes, chronic lung disease, chronic kidney disease. He had come to the hospital for emergency surgery: Part of his aorta, the main blood vessel from the heart, had ruptured in his abdomen.
Surgeons repaired the tear in Marvin's aorta and he seemed to be doing well. But three days later, Marvin's incision partially split. He had to have surgery again to repair the tear. That marked the beginning of Marvin's downhill course.
He developed pneumonia and his breathing became so labored that doctors put him on a breathing machine. A catheter in his neck got infected. He developed persistent diarrhea and a urinary tract infection. It was difficult to feed him and he had become malnourished and anemic. He was severely depressed.
`Thinking you can win'
When Marvin came to the ICU, the plan was to gradually build up his strength and his lung capacity. He was to get out of bed twice a day, once in the morning and once in the afternoon, and sit in a chair for two hours at a stretch. If possible, he was to take a few steps on a walker.
The sitting and walking would help build up his diaphragm and the muscles used to breathe. They also were meant to give him a psychological boost.
"It's hard enough being old and in the hospital. But he's in an intensive care unit. He needs a new lease on life," says Dr. Dudley Rochester, the senior physician. "If he just stays in bed, he'll think he will never get up. You need to go into the race thinking you can win."
The ICU nurses do their best to cheer Marvin on. Each step he takes is greeted with shouts of encouragement. When he gets a haircut, the nurses whistle. One tells him he looks like Marlon Brando.
"People like Mr. Marvin take lots of motivation," says Suzy Burns, an ICU nurse who specializes in working with ventilator patients. "They want to give up. They're scared about how weak they are."
Georgie Marvin does her best to give her husband hope. The nurses allow her to visit with Joe four times a day. Like clockwork, she is at his bedside for a half an hour at 11 a.m., 1:30 p.m., 5 p.m. and 7 p.m.
The Marvin's have no children or close relatives, but Georgie brings him news about their friends in Waynesboro. She's become a pretty good lip reader since Joe rarely communicates by writing. His hands are unsteady and even a task as simple as holding a clipboard seems to tire him.
As the days in the ICU turn into weeks, George Marvin notices that her husband seems to be taking less and less interest in his care. When doctors suggest that it might be necessary to surgically insert a feeding tube into his stomach, Marvin shrugs, turns to his wife and mouths the words, "What do you think?"
`It takes time'
After a month of weaning efforts in the ICU, Georgie Marvin sees little improvement in her husband. Sometimes she thinks the doctors are tinkering around too much.
"It takes time, I know," she says. "But I never would have thought it would take this long. I wonder what would happen if they just took all those tubes out of Joe and see what he could do on his own."
Nutrition becomes a problem for Marvin. Tests show that his body is not getting enough protein. The feeding tube inserted in Marvin's nose seems to hinder more than help. Marvin pulls it out at night in his sleep. When the tube is in, he often can't keep the food down and vomits. Doctors are worried he might choke.
About the time doctors consider surgery to put a tube directly into Marvin's stomach, he begins to have heart problems. He has several episodes of shortness of breath and a racing heartbeat. Doctors begin to suspect that Marvin's left ventricle - the heart's main pumping chamber - may have deteriorated to the point that it can't adequately circulate blood to the body. `Weaker and weaker'
Marvin agrees to the surgery but he fails to improve. He develops an ileus, hardening of the bowel, and can't tolerate feedings for a few days. He gets an infection from his central line. The heart episodes continue. His kidneys show signs of deterioration. Joe Marvin is not in good shape as he marks his 50th wedding anniversary.
An ICU nurse suggests that someone needs to talk to Marvin and his wife about his code status. Do they want cardiopulmonary resuscitation? Do they want dialysis?
"One of the nurses has told me twice that Joe's not going to make it," Georgie Marvin says a couple of days later. "I can see he's getting weaker and weaker all the time." About the only thing Joe talks about, she says, is going home.
A few days later, Georgie Marvin has a long talk with one of the doctors about her husband's condition. The doctor paints a bleak picture. Not only are Joe's heart episodes increasing, he's also retaining fluids around his arms, neck, hands and face - evidence his kidneys are worsening.
Georgie Marvin says it seems the doctors are giving up on Joe. She thinks they want her to give them permission to let her husband die. "I just won't give it," she says. "My mother had two heart attacks, real bad ones. And she was 95 years old when she died."
Over the next few days, Georgie Marvin grows more resigned to the possibility of Joe's dying. "They mentioned dialysis to me again," she says. "I don't know what to do, I really don't. His heart is so bad. I don't know if he'll make it. If he's going to die, why put him through all that?"
She becomes curious about Joe's bill and ask the hospital finance office to give her an estimate. The answer is precise. After four months in the hospital, Marvin's bill is $334,503.76. That doesn't include doctors' fees.
After another talk with the doctors, the Marvins decide against dialysis. The procedure itself might be enough to push his heart over the limit, the doctors say. And Joe's left ventricle probably is operating at less than 20 percent of capacity. His heart is big and flabby, like a limp balloon.
Two weeks later, Joe Marvin dies of cardiac failure.
Fanny Levy had beaten the odds. For seven years she had battled breast cancer and won, even though doctors said the likelihood of her living five years was less than 10 percent.
Despite a mastectomy and years of chemotherapy and radiation treatments and the spread of the cancer to her hip and spine and ribs, she kept at her job as a part-time bookkeeper. Sixty-nine years old, she showed remarkable grit.
As the cancer spread to her lungs, breathing became more and more difficult. There wasn't much more to do to fight the cancer but the doctors could do something to make her more comfortable. Inserting a combination of a special powder and antibiotics into her lungs would stop the pain when her lungs "stuck" to the chest wall.
The doctors scheduled the procedure with the understanding that it would be done with local anesthesia. General anesthesia would mean putting Levy on a breathing machine and doctors were afraid that she would never get off, given the poor condition of her lungs.
That was fine with Levy. She had already drawn up a "living will," outlining her desire not to have her life needlessly prolonged by technology. "She didn't want to be kept alive on machines," her daughter, Sandy, says.
Somehow, the unthinkable happened. Fanny Levy was given general anesthesia. When doctors tried to disconnect her from the breathing machine after the surgery, she couldn't tolerate it. Without the machine, she couldn't live.
`We're going to be stuck'
Fanny Levy was sent to the medical intensive care unit to be weaned. Now that she was dependent on a machine, she wanted to live. She wanted to beat the odds one more time.
For a week, the doctors try without success to lessen Levy's dependency on the ventilator. Instead of getting better, she gets worse. She develops a fever and doctors worry about pneumonia.
"I think we're going to be stuck," says Dr. Paul Suratt, the supervising physician on the unit. "I'd be real surprised if we're ever able to wean her."
Suratt thinks it's time to talk to the family about what that might mean. Would they be prepared to take care of Levy on a ventilator at home? Is that what she would want?
"Are we going to keep her here nine months on a ventilator?" he asks the medical team out loud. "No, I don't think that's an appropriate use of our resources."
The next day, Suratt and two other doctors on the unit meet with one of Levy's daughters and her husband. Also present is Dr. Mike Williams, the physician who's been treating Levy's cancer for several years.
"We've got a real difficult problem," says Suratt, who outlines his concerns. After some discussion of Levy's medical condition, Williams speaks.
"It's a spot we never wanted to be in and she never wanted to be in," he says. "Against everybody's judgment, she ended up being intubated." But now that she is, Williams says, Levy apparently wants to do anything she can to get off the machine. For example, after about three weeks, most ventilator patients are hooked to the machine through a tracheostomy, a surgical opening in the throat.
"She said, `Of course we'll do it if that's what it takes,' " Williams says.
Levy's daughter, Susan Mintz, speaks next.
"Yesterday, she wrote, `I had a very trying day.' I wrote back, `Do you want to stop trying?' She wrote, `No, stupid!' "
Williams says he doesn't see much that can be done now except to continue treating Levy. "She's alert and she wants to continue."
Suratt says he'd be surprised if Levy ever gets off the ventilator. He wonders if the medical team hasn't been holding out too much hope to her. Shouldn't she be told of her grim prognosis?
Susan Mintz and her husband disagree. They think Levy should be given a little longer to fight her dependency on the machine. Williams agrees.
"We helped back the lady into this spot," he says. "We have to support her till the time come when she changes her mind."
Suratt still feels Levy should at least be made aware of her poor chances. She needs to start thinking about what she wants done if she is dependent on the machine, he says.
"These things take time," Susan Mintz says. She believes her mother should be given the tracheostomy so she can have that time. "She's not ready to let go. She needs the chance to try."
Six days later, Levy improves to the point that doctors think she might be able to breathe on her home. She agrees to try. The tube is pulled.
But Levy wears herself out trying to breathe. Two days later, she is hooked back to the breathing machine.
Levy doesn't give up. She wants the tracheostomy. She wants to fight. She wants a chance to walk out of the hospital, free of any machine.
After four weeks of struggle, Levy does make it off the ventilator. But it is clear she will never be strong enough to leave the hospital. Two days after she breathes again on her own, Fanny Levy dies.
by CNB