In 1981, a student who had contracted a rare and deadly disease was taken to the renowned Johns Hopkins Hospital in Baltimore. His body was paralyzed, his brain damaged, his lungs working only with the aid of a mechanical respirator. Faced with the dismal prognosis, Dr. Warren Summer, director of the hospital's medical intensive care unit (ICU), mobilized his technology to keep the patient alive.
The student's father was willing to try anything to save his son--employ the best medical specialists, pursue the most exotic cures. Yet he expressed a profound fear to Summer: Could their aggressive efforts result in the ultimate technological nightmare--his once-dynamic child sustained indefinitely as a "vegetable?"
"The father," Summer recalls, was a "striving, achieving perfectionist. Right from the onset he spoke to me. . . . He beseeched me and implored me--which is not wrong in a sense in this case--to tell him that when all this was over, if he had made this horrible mistake of not letting his child die . . . would he have to live to regret that for 25 years? . . . That was too much for him.
"I assured the father that I wouldn't allow him to be stuck with a vegetable," Summer recalls. "I assured him that he wouldn't have to live with this decision for 25 years--that either we'd win, or we'd lose. There would be no 'in the middle.' . . . That was something that he held me to, in a sense."
For two months Summer and other doctors carried out the father's instructions and tried everything medically possible. But the student showed little improvement. He had a double handicap: Not only was he still in a coma, but the paralysis made it impossible for him to breathe without the respirator. Legally he was alive, for there was minimal brain activity. Realistically, all the physicians concluded, there was no chance the student would ever regain consciousness.
Finally, the family agreed it was hopeless to continue. Summer prepared to uphold his pledge, and set a specific time to shut off the respirator.
The one thing he hadn't planned on was the reaction of his nurses. They had become emotionally attached to the student and strenuously objected, saying the decision to let him die was morally wrong.
"The father once said if his son was going to be a vegetable and not live a normal life, he didn't want him to live," recalls nurse Janice Stangroom. "What if he was a quadriplegic? Would he say the same thing--'I don't want him to live?' It was the whole issue of who's deciding who's going to live and who's going to die...All of a sudden they wanted him dead. . . . I don't think we have the right to decide."
After a confrontation with his nurses, Summer backed down. The father, outraged, weighed in with his own emotional appeal to Summer: The family had come to terms with the decision to disconnect the respirator, the funeral had been planned, a eulogy written. In short, the death had been promised.
Summer was in a quandary. Hoping to appease everyone, he had satisfied no one. He wanted to make the best decision for the student and his family, but other patients' lives also depended on the morale of his nursing staff. Summer realized he would have to find a way to balance the conflicting demands--the nurses' concerns, the patient's needs and the wishes of the family.
In a given year Summer treats more critically ill patients than most doctors see in an entire career. His patients are among the sickest in Baltimore, maybe anywhere, because many are referred from hospitals in other cities. They include business executives and doctors, and bums who have collapsed in the streets of Baltimore.
Summer tries to prepare his staff for any possibility, any disease, any catastrophe. There recently was a middle-aged man who underwent surgery and never awoke; a 450-pound woman eating herself to death; and a state prisoner who hanged himself, was rushed to the ICU and pronounced dead, then maintained on a respirator until a medical transplant team removed his eyes and kidneys. In Summer's ICU, even death can beget life.
Summer has but one goal: to save lives. "You only have life with dignity," he says. "There is no dignity in death."
He sees a death, and he sees a failure. With advanced technology, he tries to stave off the inevitable--he manipulates death, postpones it, tries to control it. About 600 patients are treated in his ICU each year, and on the average about 400 of them survive.
In the autopsy room every other Friday, Summer confronts his failures. One by one, a pathologist uncovers the trays: here's a heart, here's a lung, here's a brain. Often it is easy to see why these patients have died--damaged tissue, diseased organs. Other times the answers are not clear and Summer will ask: "What the hell killed the patient?" The pathologist responds, "He was old." Summer says, "What do you mean 'old?' You don't die from being 'old.' Something's got to do that. Now I deal with the 'something.' . . . What did I do wrong?"
Summer strides into the seven-bed ICU each morning at 8:30 to begin rounds. Wearing his white coat, he examines each patient, occasionally massages their shoulders, checks test results, orders new procedures, teaches a steady stream of young doctors. "I've never seen him yawn," says Dr. Joseph Ahern, who has worked for Summer. "It is kind of infectious, his energy, his desire, his demand for quality," says Dr. David Plump, another ICU physician. "It does set a certain standard so that even in the middle of the night he may not be there but the staff knows things better be in order, the attention to detail, the striving for a certain quality of care."
One day last fall, a young heroin overdose victim was rushed in, unconscious, not breathing. A dozen nurses and doctors surrounded her, pushing needles into her arms and thighs, a breathing tube down her throat. She did not respond to the immediate dose of therapy. Summer worked harder, first at her bedside, then at the controls of a nearby computer as it spewed out strips of graphs and numbers. He pushed his technology to the limit, and after more than an hour she turned around.
Two weeks later, Summer visited her on a ward. "Can you hear me?" Summer shouted. She was unresponsive. "I guess that I'm just a glimmer of light to her," Summer said to a nurse. Then, in a barely audible voice, she whispered, "I see you as a light." Summer was stunned. "Can you understand me?" he asked. She nodded slowly. "You're great!" Summer shouted, almost dancing out of her room. She had suffered severe brain damage but the important thing to Summer was that she was alive.
Summer had rarely seen a patient as sick as the student with the rare disease. From the beginning no one really knew what course his illness would take. There was no known cure. The few patients who survived reportedly came out of their comas soon after they were stricken. As each week passed without improvement, the student's chances seemed to diminish.
"The father, being such a compulsive person, looking for straws, had written many, many doctors . . . who had seen similar cases who woke up after three months, or six months and got better. . . . Our general feeling was that he would not," Summer recalls.
"He required unbelievably high antibiotic levels, new combinations never previously used. . . . I did spend more time with him, and the family demanded more time. And they would call me at home once or twice a week. . . . They would come often. . . . We worked like dogs on the things we could do."
Summer and the other doctors concluded after about a month that there was nothing more they could do. But they agreed that any decision to end therapy would have to come from the family.
Dr. John Freeman, a neurologist at Hopkins who assisted Summer on the case, says, "It's not a doctor's decision to turn off the respirator. It's a doctor's decision to begin talking about turning off the respirator and then to get to the point where the family comes to that decision on their own."
Freeman, a friend of the student's family, was designated by the father to represent the family's point of view for this article. "Emotionally, we have been through a great deal," the father said in a brief interview.
Freeman says the student had once been an exuberant, intelligent young man. To his family, these were important considerations in determining an acceptable outcome.
"They felt strongly that he would not have wanted to exist without being able to use his mind or his body, and that mere existence would have been less important to him than the quality of that existence," Freeman says.
"They were willing to take home a child who was paralyzed if they could relate to him. They were willing to take home a child who would be somewhat intellectually impaired if they felt that he would enjoy life. But they did not want to perpetuate the existence of an individual whom they felt would be extremely unhappy--if he were conscious enough to be unhappy."
Now and again, there was some noticeable change in the student's outward appearance. "Sometimes it would be relatively dramatic change," Summer says. "He'd go from 'eyes closed' to 'eyes open.' And then he'd go from 'eyes open' to following light. He'd look around. And then that was it--didn't go any further. So we continued to pray and hope, look for the optimistic silver lining. . . . I don't know if he might have gotten 10 percent better in another six months, but that wasn't enough.
"He was a lot better than when he came," Summer says. "He would respond to noise, respond to light, in a vegetative way follow light around. And those are the worst kind of patients because you walk in the room and they look alert. Their eyes may even follow you around as you walk around the room, because they follow the shadows. . . . Although there probably are no real human qualities . . . sometimes it can fool you."
After five or six weeks, Freeman says, the doctors thought it was time to approach the family about turning off the respirator. "It became apparent," Freeman says, "that he was not waking up, and that the paralysis was not getting any better."
A CAT scan showed there was some pressure on the brain, and an outside specialist suggested they try one more procedure to relieve it.
"The idea was that if he didn't get better after this we were going to pull the plug," Summer recalls. "We mobilized forces to do the last push."
The father "wanted to go the extra mile," Freeman says. "He wanted to be not just 99 percent sure, but 999,999 percent sure."
The procedure was completed, and an electroencephalogram (EEG) showed that while there was slight improvement, the brain remained "bizarrely distorted," according to Summer.
"What's important is what the kid's doing, not the squiggles on the EEG," Freeman says. "Whether there was a little more squiggles or a little less squiggles was relatively unimportant."
Summer sought the counsel of the Rev. Clyde Shallenberger, 55, the director of the Hopkins chaplain service, who has made daily rounds in the ICU for years. He is a kind of conscience, someone who often helps Summer reach his decisions, someone who says he believes that the medical profession has been seduced by its own competence. He is not antitechnology, but in his view there is only one guarantee in life: Nobody gets out alive.
Once Shallenberger was satisfied that the student's condition was irreversible, he saw no obligation, religious or otherwise, to artificially prolong the student's life. "I think they almost dragged it out too long," he recalls. Disconnecting the student's respirator, Shallenberger says, presented no ethical problem. "That's something we have injected into his life, not something he brought in."
At this point the parents agreed it was futile to continue trying. "This was the last straw," Summer says. "The family had put most of their hope into the possibility of this last-ditch procedure. We had tried everything else. They had had it. . . . They wanted it over. . . . They wanted a person. The father, again, is a very demanding person. I don't know what he would have accepted. . . . It is possible we could have really had a problem, vis- a-vis the father's expectations of what he called a person . . . and what humanity would call a person. It just so happens that he didn't qualify for anybody's person."
Summer recalls: "The family, giving up, quitting, crashing emotionally, my now realizing that it's absolutely hopeless, my neurologist Freeman telling me that it's hopeless . . . all this led to the orchestration of a death."
It was scheduled for a Sunday morning.
Intensive care nursing takes a heavy emotional and physical toll, but in Summer's ICU, the morale is generally high. The nurses are the backbone of the unit, the key to its intimate, round-the-clock medical care. Summer tells the young doctors who rotate through the ICU every few weeks that if there is disagreement between them and the nurses, he will support the nurses. He once wrote a message to the nursing staff: "You folks are the best."
The nurses had become devoted to the student, caring for him almost as if he were their brother. "It was a very difficult case," Jane Sharrocks recalls. "He was a bright, young-looking kid, almost in our age group." Nurse Donna Zwarra says: "We were talking to him, talking to him about the weather, treating him as if he could hear us."
They, too, were aware of the slightly improved EEG and of the student's eye movements. And when they had to remove the respirator tube briefly to clear his airway, they say they saw him gasp, as if he were attempting to breathe.
The night before Summer intended to turn off the respirator for good, the nurses learned of the plan.
"To me it was almost morbid," Sharrocks says. "They planned it to the hour, going about the details the way you'd plan out a party."
"We all knew what it would mean, that he would die because he wouldn't be able to breathe on his own," nurse Olivia Lux recalls. "I remember the nurses who were here saying 'I can't believe they are going to do it.' There had been a subtle improvement. They thought he was starting to look around more."
Some of the nurses prevailed on Dr. Terry Boulware, one of the young physicians assigned to the ICU that night, saying, "You can't let them do this to him."
Boulware, 28, says he listened with some skepticism to the nurses' plea that there were indications the student was trying to survive. Boulware says he reviewed the patient's chart and was concerned when he could not find a final entry documenting the hopelessness of the patient's case. He and another doctor agreed to examine the student. They briefly removed the respirator. There was "respiratory movement," Boulware recalls. "It surprised me."
Boulware says he decided something had to be done. "I think there was this general sense that although we were not the ones per se who were going to turn off the machine, that we, as a group, were allowing people to plan the date, the time, the hour, and we just felt that that was inappropriate."
Boulware telephoned Dr. Victor McKusick, chairman of medicine at Hopkins, who had ultimate authority over the ICU. Others were contacted, including chief nurse Carol Laprade.
"I got phone calls all night," Laprade recalls. "The night staff was very upset. The patient was showing signs of improvement that he had never shown before. They felt all these things should be looked at. They felt the pressure coming from the family to forget it. The father had written the eulogy and showed it to the staff. . . . One of the physicians said, 'I'm very uncomfortable with the situation.' "
The most persistent objections came from a 24-year-old nurse, Janice Stangroom.
"We got attached to the patient," Stangroom recalls. "Every young patient we get, you can really see the fight in the staff. We had spent so much effort on him. . . . The doctors were real aggressive, and then bam--the end.
"People want everyone to come out perfect--or we failed. I don't think that means you failed if they don't come out as they did before."
Stangroom has another, more personal, reason for her reaction. She has a retarded brother. Her family has accepted him.
When Summer and Freeman entered the ICU the following morning, prepared to turn off the respirator, they found themselves facing what Summer calls a "complete rebellion" of his ICU staff.
Summer was particularly surprised to see his boss, Dr. McKusick. At 62, McKusick says the older doctors must sometimes "hold the young folks off, from over-investigating and over-treating the hopeless illness." The same fighting spirit was instilled in him during his medical training at Hopkins 35 years ago. Doctors of his time were taught, "You never said die--no matter how difficult the situation was." But back then, doctors didn't have any respirators to withdraw; in fact, there was no such thing as an intensive care unit.
McKusick examined the student, and indicated to Summer that he could go ahead and turn off the respirator.
"I was ready to do it," Summer recalls. "Victor McKusick had given me his okay, Freeman gave me his okay. But the nurses couldn't take it."
There was a confrontation at the nurse's station. Boulware recalls telling Summer: "We're trying to protect you, Dr. Summer. . . . Why take a chance?"
When Boulware complained that the chart did not reflect the basis for the decision, Freeman recalls, "I went up and wrote it in the chart."
Summer says that it was hard for the nurses and Boulware to understand "that although the EEG was a little better, it was still impossibly bad."
Summer says he then turned off the machine. Again there were the attempts to breathe, shallow breaths--in his opinion, they were insufficient to sustain life.
"The nurses saw him struggling to breathe, at a brain stem level, and they couldn't stand it," Summer recalls. "There was just something wrong. . . . There were religious reasons. There were emotional reasons. There were psychological reasons."
Summer placed the student back on the respirator.
" I couldn't do it, not because I couldn't personally do it, but I couldn't do it to them," Summer says. "You can't go from one extreme to the other extreme. You can't value life as the most important thing in the world and kill yourself to save it, and then decide that that life ain't worth nothing."
Summer called the student's father and said the death was off.
The father was irate.
"Look, just have faith," Summer recalls saying, "I'll work it out."
Summer developed his alternative plan. He would wean the student off the respirator, a standard procedure in many cases. This process, he believed, would satisfy the nurses' concerns. If there was any chance the student would breathe on his own, it was more likely to happen if the respirator were turned off slowly, and not abruptly as planned.
Summer pulled the curtain in front of the bed where the student lay, and warned the nurses not to come in. Then, over a period of hours, he gradually turned down the respirator.
To Summer, it was a meaningless exercise, a charade. The outcome would be no different, he says. "I knew he was dying."
The nurses stayed away. Nurse Lux recalls: "The decision was made. There was no point torturing yourself to go into the room, watching him gasping for breath."
"He died over eight hours," Summer says. "And then I called the family and told them it was over. Might have been maybe 3 o'clock or 4 o'clock that day. So instead of 9 o'clock, it was 4 o'clock."
The burial took place as scheduled. The eulogy was delivered by the father.
"This father was very devoted and very proud of his son," Freeman says. "There is no question that in both parents' minds that they were acting in the best interests of their child."
Freeman stands by the difficult decision the family and doctors reached. "When it becomes easy or routine, then I think you ought to change jobs," he says. "It should always be agonizing for the physician and the family. That's the way that you protect yourself from being wrong."
He says that scheduling the time of death was "a tactical mistake. . . . We don't do this for anybody else. We say that we think your baby is likely to die in a day or two, and he dies. And we call up the family and say he's dead. That's just a cleaner way of doing it."
A few weeks later, Summer held a special meeting for his nursing staff that was also attended by Shallenberger. Summer talked at length about the pressure he had felt from the father.
" I gave assurances that I had learned a lesson from this," Summer recalls, "that I grew and how I had maybe for the first time in nine years been somewhat manipulated, somehow thrown off stride, off balance."
The nursing staff came around. "They did not realize the pressure which Warren was under," recalls head nurse Laprade. Donna Zwarra says: "He was so terribly honest with us." Even Janice Stangroom was satisfied: "Warren was caught in the middle. He goes all out for the nurses up here."
"It was not a slipshod decision," Summer says. "It was clear to them we labored over it, we struggled with it, we thought about it; and I, as the person they may most respect, was convinced in the deepest of my heart, the deepest of my brain, that there was no hope. . . . They felt better about that. And I felt better. I think they were able to feel my pain, my anguish, my difficulty." Tomorrow: Part 4