Shortly before noon last Sept. 22, six young doctors were called to a small conference room at George Washington University Hospital. They were intensive care physicians, whose job it was to save hundreds of critically ill patients each year, once even the life of the president of the United States. At this meeting, they would confront a paradox of modern medicine: a patient who had been saved by mistake.
An elderly patient with terminal lung disease, kidney failure and a bad heart had collapsed over the weekend in an X-ray room in the hospital. He had been saved by a crack resuscitation unit called a "code team" and sent to the intensive care unit (ICU). Again conscious and alert, the man was breathing on a respirator in a nearby room. In fact, he had not wanted his life artificially prolonged by medical technology. His private physician had known that; the GW resuscitation team had not.
Dr. William Knaus, 36, codirector of the ICU, raised the essential question: Should the respirator now be turned off?
Some of the doctors were troubled by that prospect.
"If we turn off the respirator we know what would happen. I haven't faced that before," said Dr. Karen Goodlett, 26. "The doctor in you always wants to reverse conditions . . . . We're making assumptions about quality of life . . . .
"I may be more idealistic than someone who's been in the system for years and years . . . . I'd feel guilty that I was forcing my opinion on the patient . . . . It's termination of life."
Some of the other physicians crowded around the table echoed her concerns. Allowing the man to die, said one doctor, means "we failed with the patient--not on an intellectual basis but emotional." Another said: "The onus is high. There is a higher degree of blame if we let the guy die . . . . People are always pointing the finger, saying 'You killed the guy.' "
Knaus reminded them that although disconnecting the life-support system would, in fact, terminate the man's life, his illness was irreversible, he was close to death, and his wishes were explicit.
"When the patient says, 'That's what I want,' you bite the bullet and do it . . . . Because you can be temporally associated with the time he dies," Knaus counseled, "do not translate that into saying, 'I am responsible for his death.' What will kill him is his lung disease."
Christine Wanke, a senior ICU physician, pointed out that while the respirator could support the man indefinitely, it would not cure his incurable disease. "You're treating yourself instead of him," she said to the doctors who were still uncomfortable. "You're treating your own guilt."
A few days after the meeting, before the doctors reached a decision about the respirator, the man died. This time, to make sure he would not again be resuscitated, Knaus had officially designated him a "blue star" patient, a clear instruction that he was a "no code" and the staff should not summon the resuscitation team.
KK naus serves as one of three physicians in charge of the 16-bed George Washington K ICU. His sophisticated technology--the respirators, kidney dialysis machines and monitors--takes over the functions of most major organs of the body: the lungs, kidneys and the heart. In a mechanical sense, they attempt to duplicate what a healthy body accomplishes naturally. The respirator even sighs for the patient.
In a place so geared toward maintaining life, Knaus also spends a lot of time talking about death. When a patient's condition is hopeless, Knaus hammers at this theme: Death is unavoidable. Physicians ultimately cannot prevent death.
"You will determine by 'no coding' or withdrawing therapy the exact time someone dies," Knaus tells his staff. "Today or tomorrow; 2 o'clock in the morning versus 6 o'clock in the morning. You control that. But everyone is going to die. You cannot stop death." Knaus says of the new physicians: "They're confused, because I think they're . . . representative of what society is, and society is confused right now . . . . They want to do the right thing, but they are not exactly sure what the right thing is."
After seven years in the ICU, Knaus has become thoroughly familiar with "no codes."
"Some months we'll have a lot of 'no code' decisions, some months only a few," Knaus says. "But it's unusual for us in the unit not to have at least one person whom we're taking care of where the discussion of limitation of therapy at least is brought up."
Of the 146 patients designated "no codes" in the GW intensive care unit over the past two years, the typical age was about 60. The formal "no code" orders were written, on the average, after 6 days of aggressive but futile treatment. "When you make a decision about either withholding or limiting support to someone, that decision is never going to be perfect," Knaus says. "Obviously you want it to be the best decision it can be because it has such tremendous implications.
"What I would hope is that patients and families would admit that despite the tremendous progress we've made in medical care, there are still many situations where we are without cures and therefore the need to talk about limiting therapy is necessary."
Knaus distributes to his staff a guidebook on ICU therapy. The 11th chapter, which covers decisions to limit therapy, contains seven pages of discussion on how to talk with the family about a "no code" decision, how to document it, what to do if there is disagreement.
"It's always been our philosophy that these issues have to be discussed explicitly," Knaus says. "They have to be written down. . . . There can't be anything hidden in any format because when you don't talk about these things, that's when the tension really results."
The guidelines caution the GW physicians: "No matter how precise our methods of prognostication become, there will always be uncertainty about decisions to limit therapy. The patient you are treating may be the first person ever to survive. This uncertainty is not unique. Almost all decisions physicians make involve uncertainty, and one of the skills a good physician learns is how to balance uncertainty versus the indiscriminate application of technology.
"Therefore, if you decide the proper course of action involves doing less for your patient, recognize that this too is a natural extension of your responsibility as a physician."
Knaus says, "There are some physicians who maintain that we should do everything possible to prolong life, and you can't make any decisions about the quality of life itself. There are physicians who believe that very strongly, that 'quality of life' decisions are left to the individual, and as a physician your job is to prolong life. And life can be defined as simply a heartbeat. If you can start the heart again, you should start the heart again. You should start the heart 25 times until you can't start it anymore, regardless of whether the person's conscious or unconscious, or whether the person is in pain or not in pain.
"I don't believe that. I don't think that's being a scientist, nor do I think it's being a physician."
OO n Dec. 3, Knaus met with the husband of an elderly woman who had died in the O George Washington ICU after a long and arduous bout with an incurable, degenerative muscle disease. The woman had been in the ICU four times before. She had pneumonia eight times.
The ICU staff fought to save her life. The husband had been optimistic, but when her condition worsened and she slipped into a coma, the doctors asked for his permission to allow his wife to die.
"She was a fighter," the man recalled. "She was going to walk out of here." Then he stared off: "I was with her the last few hours. She went like a lady. . . . The nurse took her pulse and said, 'I'm not getting a pulse. I'm getting a heartbeat.' Then the heartbeat stopped. I gave her a kiss and I walked out."
The man said he has thought a lot about the "no code" decision. "Every doctor faced with that decision has to face it in an individual way," he told Knaus. "There are no guidelines. There are no books. It comes from each doctor's own background, his own ethics, his own religion . . . We're talking about playing God. The question is, 'Should the doctor be God?' "
Knaus replied gently: "It wasn't us making the decision. God was making the decision. We were just responding."
" It's not a life-and-death decision?" the man asked.
"It's a very complicated medical decision," Knaus said, "but it's not a God-like decision. We can make the decision that this person will die on Tuesday or Thursday, but not that this person will not die. It is up to God. What we have to do is not fail to recognize that."
KK naus says he believes his obligation should always be to the patient, even if it K means contradicting the family's directions.
A paralyzed woman in her sixties was rushed to the ICU last summer from a nursing home. Her breathing failed. She was revived and placed on a respirator, and remained on it for several weeks as Knaus treated her without success. He concluded that her lung problem was irreversible, that she would never survive without the respirator, and he proposed that while the respirator be continued, other treatment be stopped. Eventually she would contract another illness and be allowed to die.
The woman's husband bristled at Knaus' suggestion.
"You've got to continue to treat her," Knaus recalls him saying. "I want my wife . . . God doesn't want us to make these decisions."
The woman was conscious and awake but the respirator tube made it impossible for her to speak. So she gestured and mouthed words and wrote notes to Knaus, all the time deferring to her husband, who remained steadfast.
After another week or two, Knaus called in the woman's minister. Together, they went to see the woman without her husband.
"Only one person can make this decision," Knaus told her. "Your husband's making it this time. We're not sure what your husband is saying is really what you want to say."
After a lot of discussion, Knaus recalls, the woman communicated her fears: " 'I really don't want to live this way but I'm afraid that if I tell you not to continue to treat me, I'll go to Hell and that God would think I'm committing suicide. . . . My husband says if I do this, I'll be damned. . . . '
"The minister straightened that out," Knaus says. "He said she wasn't under that kind of obligation. . . . He said, 'God doesn't want us to take our own lives, but at the same time, God recognizes the fact that there's a natural end to life, there's a time to pass on . . . . This is unnatural. This is not within God's decision-making. God didn't put you on this respirator . You are not going to be penalized by God if you decide that since you can't get better . . . you don't want people to continue to treat you this way.'
" She was bright and clear . . . . She said, 'I really don't want to continue to live this way.' And after she had had assurance from him that this was not committing suicide, this was not taking her own life, this was simply acknowledging the end of her very long chronic illness . . . we discharged her from the intensive care unit to a regular ward with the understanding that . . . we weren't going to stop any treatment but that new problems wouldn't be treated."
Knaus says the woman had a final request: "I want to make sure that when I die, I'm not alone, that someone is with me when I die."
"We made sure that that happened," Knaus recalls. "She died about five days later.
"That was the patient making her own decision under what is probably one of the most difficult circumstances . She knew that when she said that, that her death was going to be faster . . . . She knew because we told her."
Knaus says many physicians are reluctant to make "no code" decisions because they think: "What if I make a mistake? What if I 'no code' someone I shouldn't have and the person would have survived?"
LL ast November, Knaus was caring for a cancer patient in his sixties who had been L placed on a respirator because his lungs had failed.
Knaus treated the man's breathing problem for weeks--unsuccessfully. He concluded that the situation was hopeless, that the man's quality of life would never improve. The man was writing notes to Knaus, saying, "No more machines," and the family agreed.
Knaus decided to remove the respirator. It was scheduled for a Saturday morning. The outcome was unexpected.
"We thought that removing him from the respirator would lead to his death," Knaus recalls. "We had told him that explicitly . . . . We were wrong . . . . It was clearly a misprognosis. It was clearly a mistake."
Not only did the man breathe on his own, but his condition gradually improved until he was transferred from the ICU and later sent home.
Had Knaus known, he says he would have been less hasty in removing the respirator, would have treated the man as if he were going to leave the hospital alive.
With some trepidation, Knaus visited the man in his hospital room and later at his home.
"As I told him who I was," Knaus recalls, "and where we had met and talked, he began to remember me, and began to remember a little bit about some of the conversations we had had.
"He remembered writing 'No more machines,' and he'd remember how frustrating it was trying to write, how his pencil kept slipping out of his hands, and how it was difficult for him to write while he was that sick, and on the machine.
"He said, 'One thing I remember about the ICU is that I kept seeing a face . . . . And the face had its mouth open. Recently I was . . . looking through these magazines and all of a sudden I came upon this painting . . . . It was a close-up of one of William Blake's paintings, and in the painting is the picture of the devil with its mouth open, screaming . . . . That's the face that I kept seeing the whole time I was up there . . . . It really wasn't as frightening as you might think.'
"Over the course of about the next month," Knaus says, "I told him what had happened, the problem we had had making the decision, and asked him what he thought of the whole process.
"He said: 'I want to live just like everybody else does. But at the same time I realize that I have cancer, and I'm probably eventually going to die from it. And I don't want, at the end of my life, people artificially treating me just to do something. I don't want to put my family or myself in that kind of agony.
" 'You had to make a decision and you did the best job you could . . . . I don't hold it against you that that decision was wrong . . . . I'm glad you were wrong but I can't criticize you for making what, in retrospect, was a wrong decision because it was made with the best of intentions . . . . I was too sick . . . . I would have accepted whatever you did. I can't help you. That's got to be your decision.' "
Suppose, Knaus asked, the man's family had opposed the removal of the respirator?
"Doc, you got to make the best decision," the man said. "My family, they're not doctors."
Knaus says that to hear someone whose life had been on the line validate the "no code" decision was reassuring. But there was something eerie about it, something that challenged Knaus' basic idealism. Above all else, he respected a patient's right to share in the life-or-death decision, yet this man barely remembered participating.
It became clear to Knaus that in the stressful atmosphere of the ICU, the physician was always in control--of the language, of the medical machinery, of the intimidating environment. Patients were probably incapable of really knowing what was best for them and they would always have to turn to doctors for answers.
Knaus' burden was inescapable.
Tomorrow: Part 3