By GINA KOLATA
Published: January 11, 2009
For years, doctors thought they had done their jobs if patients came out of an intensive care unit alive.
Now, though, researchers say they are alarmed by what they are finding as they track patients for months or years after an I.C.U. stay. Patients, even young ones, can be weak for years. Some have difficulty thinking and concentrating or have post-traumatic stress disorder and terrible memories of nightmares they had while heavily sedated.
While patients may be suffering lingering effects from illnesses that landed them in the I.C.U., researchers are increasingly convinced that spending days, weeks or months on life support in the units can elicit unexpected, long-lasting effects.
So now some I.C.U.’s are trying what seems like a radical solution: reducing sedation levels and getting patients up and walking even though they are gravely ill, complete with feeding tubes, intravenous lines and tethers to ventilators.
Even a few days in an I.C.U. can be physically devastating immediately afterward, said Dr. Naeem Ali of Ohio State University. In a recent study, he and colleagues at three other universities reported that 25 percent of patients who had spent at least five days on ventilators could not use their arms to raise themselves to sitting positions. Many could not push back against a researcher’s hand.
“We had a handful of patients who essentially looked paralyzed,” Dr. Ali said.
Researchers say the questions about how and why an I.C.U. stay can be so devastating — and new efforts to bring a marked change to the experience — are of increasing importance because, as the population ages, more people are being admitted to the units. And, with medical advances, more patients are surviving.
“We had thought these patients just heal up,” said Dr. Peter Morris of Wake Forest University Baptist Medical Center. “But now so many of these reports from different universities say they are not really O.K..”
Every I.C.U. doctor seems to have a story of a patient who illustrated the problem in an unforgettable way.
For Dr. Morris, the moment of truth came when he visited a young woman he had recently discharged from his intensive care unit. She was in a regular hospital room, lying in bed, a tray of food on the table beside her, the food still covered with a plastic lid.
“I said, ‘How are you doing? Are you hungry?’ ” Dr. Morris asked. “She said, ‘I’m very hungry.’ ” But, she explained, she was too weak to lift the lid from the tray and could not feed herself. She could barely move her wrists off the bed.
“A light bulb went off,” Dr. Morris said.
For Dr. Dale Needham, who runs the critical care physical medicine and rehabilitation program at Johns Hopkins, the moments of truth are coming from a study he has begun, following patients for five years after they leave the hospital. Many had a hard time regaining their strength, and some were never the same after their I.C.U. stay.
Now, Dr. Needham said, instead of declaring success when a patient leaves an I.C.U. alive, he and others have a new set of challenges.
“We are asking ourselves, what can we do on Day 1 to get you out of the hospital and back to work sooner, without problems with weakness, mood and thinking? What can we do for you?”
Robert Ford, a high school lacrosse player in Salisbury, Md., went from healthy to desperately ill with pneumonia the night before his prom. He recovered remarkably quickly, spending just six days on a mechanical ventilator in the I.C.U.
That was in April 2007. Now, his mother, Jacalyn Ford, said her son “doesn’t have the concentration or the patience he used to have.” When she looks at him today, she said, “I see a totally different personality.”
Dr. Needham, who recently evaluated the young man, said his strength and exercise capacity were below average for his age. Given his history as an athlete, they should have been above the mean. As much as Rob wants to play lacrosse again, he does not have the strength or stamina.
It remains difficult to tease out which disabilities come from the illness as opposed to the I.C.U. stay, but scientists are beginning to worry about the effects of simply being in an intensive care unit, on a mechanical ventilator that pushes oxygen under pressure in and out of the lungs, receiving doses of sedatives, narcotics and anesthetics high enough to make even healthy people stop breathing on their own. They have been particularly surprised by how quickly patients had lost strength. Now, it looks like what was lost may not completely come back, even years later.
“We are in the infancy of trying to figure this out,” Dr. Morris said.
Most patients who spend time in an I.C.U. lose significant weight.
Some are like one of Dr. Morris’s recent patients, Michelle Rhynes, 35. Ms. Rhynes, who lives in Winston-Salem, N.C., was confined to her bed for four days with bronchial pneumonia, burning with fever. At 2 a.m. on the fifth day, she collapsed when she tried to get up.
“I asked a friend to call an ambulance,” she said. “When I got to the hospital, I couldn’t breathe.”
She spent a month in the I.C.U., breathing with the aid of a mechanical ventilator, a feeding tube in her stomach. Ms. Rhynes, who stood 5-foot-6, experienced a loss in weight to 95 pounds from 140 pounds.
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Or they are like Gary English, one of Dr. Needham’s patients. He lives in Baltimore, has chronic obstructive pulmonary disease and spent two months in Hopkins on a mechanical ventilator. When he got out, Mr. English, 57, who is 5-foot-9, said he weighed 78 pounds. A year later he weighs 110.
Dr. O. Joseph Bienvenu, a psychiatrist at Johns Hopkins, worries about post-traumatic stress disorder. While many remember nothing of their time in an I.C.U., others cannot forget horrifying hallucinations. The experiences are all the more terrifying because patients cannot talk with mechanical ventilator tubes in their throats. Their illnesses may produce delirium, but so may the drugs used in sedation, Dr. Bienvenu said.
“One man told me he saw children’s faces that were blacked out and blood running down the walls,” Dr. Bienvenu said. “He thought he’d been kidnapped and tortured. One woman said she saw her husband and a nurse talking, and she thought they were plotting to kill her.”
When Dr. John Kress, director of the medical I.C.U. at the University of Chicago, began focusing on lasting effects of an intensive care unit stay, he wondered whether the sedatives keeping patients comfortable might actually be making them worse.
So his group tried an experiment, waking patients briefly every day by turning off their infusion of sedatives.
Not everyone approved. “People were concerned about waking patients every day, that that might put patients in a state of fear and dread and anxiety,” he said.
But, he added, “we found, to the contrary, that patients actually did better” and even had a significantly lower rate of post-traumatic stress disorder, which is manifested by such things as mood disorders, anxiety, difficulty concentrating, shortness of temper and frightening memories. It is not clear why there was less post-traumatic stress but, Dr. Kress said, “My opinion is that maintaining some awareness of reality is better for your psyche.”
That led him and his colleague Dr. William Schweickert to ask: What if the patients could actually sit up in their beds or in a chair or even walk, despite their life-support lines and tubes? They would need help from nurses, and physical and occupational therapists, but would it be possible? And, if so, would it help them or set back their recovery?
Others, including Dr. Needham, Dr. Morris and Ramona O. Hopkins, a professor of psychology and neuroscience at Brigham Young University, had the same idea and found they could get patients up and walking.
Dr. Needham said, “I meet some doctors and nurses who just shake their heads.” But, he tells them, “What you think is impossible actually happens in my I.C.U.” And, he said, “Patients like it.”
Dr. Morris found in a pilot study that the patients also seem to recover faster, spending less time in intensive care and the hospital.
But some, like Dr. Ali, who favor the idea, say it is not always feasible. “We don’t always have the right staff,” he said, explaining that it takes a team of nurses and physical and mechanical ventilatory therapists to walk intensive-care patients safely. And, he added, patients who are resting and sedated need less oxygen, which may make it safer to stay in bed.
“Our biased impression is that mobilization is helpful,” Dr. Needham said. “A typical patient may not even be able to walk when they leave the I.C.U. or even the hospital. When we see them walk in the I.C.U., we believe that has to be better.”
But, Dr. Morris said, the proof may come in clinical trials that he, Dr. Needham and others plan to do. And, he added, considering how patients fare, even when they are helped to walk while they are in the I.C.U., “there’s lots of room for improvement.”
Tuesday, January 13, 2009
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