This is the account of a decision by physicians in a Washington area hospital who were faced with the question of whether to sustain a life by artificial means. The names have been charged to protect the privacy of the individuals involved. Everything else is reported as it occurred .
Dr. James Hannan sat down heavily in his desk chair and reached for the phone. It was after 7 p.m. and he had not yet told his wife he wouldn't be home for dinner.
"Hi. I'm going to be late. We've got a just terrible problem here," the director of the hospital's intensive care nursery told his wife. "It's a new baby that came up with multiple anomalies [birth defects] and we're trying to decide . . ." He paused as she asked a question.
"No, no. That baby hasn't even come in yet. This is another kid I've got on a respirator, and he's passing [fetal feces] through his penis, and he had no anus, and he has a cardiac defect and an abnormality of the cartilage and big, doughy masses which are probably ureters" - tubes linking the kidneys to the bladder.
"It's the first baby and the parents are all upset and we had to put him on a respirator on 100 percent oxygen. It began about two hours ago. No," he said, answering a question, "it was an elective cesarean, Don Benjamin was the OB.
"No, go ahead and feed the kids but save me something to eat. I haven't had a thing. Put Jeff on the phone, please.
"Hi, Jeff. Sorry I can't come home to read 'Winnie the Pooh' with you, but I have to stay here. I've got a little baby that's real sick. It's got a lot of problems. It's very, very sick. Your Teddy has a little sickness? Well, I'm sure your Teddy will get better. How'd school go today? Okay, I love you. sleep tight . . ."
He hung up the phone and redirected his thoughts to the newborn baby in the nursery acrossthe hall.
Hannan, at 39, has seen more desperately ill infants than most pediatricians see in a lifetime. Like only about 600 other doctors across the country - perhaps a dozen of them in the Washington area - he practices in one medicine's newest specialties: neonatology, or the care of the newborn, a field largely ignored two decades ago.
As director of the intensive care nursery, he supervises the care of roughly one-third of all the babies born in his hospital.
Half of those find their way to the nursery for only a day or two, victims of nothing more than a few degrees of fever or perhaps an inexplicable rash. The rest, however, arrive with life-threatening problems: A birth weight of only a pound-and-a-half; serious lung disease; being born without a portion of the brain.
Baby Boy Alvarez belonged in the latter category.
"Man," sighed Hannan. "What can you say? You feel sorry for another human being, but I don't know what to do. If the kid has a lethal defect you can be positive the kid's going to die. But you come to that little thread; now how far out on the thread do you go?"
He had already consulted a pediatric surgeon, and a cardiologist was on his way to the hospital. "I keep stringing it out to Dave [the cardiologist], but I know what Dave's going to say. I'm going to get."
At that point Hannan was working under the assumption that the baby had a major heart defect, and that only the remants of his fetal circulatory system were keeping him alive.
There are ways, he explained, to keep the fetal system going but they don't always work.
"This business: There's always one more little thing you might try; one more little thing that you might do; one more little exercise. It's the thing people don't understand.
"Talk about heroic care or extraordinary care," said Hannan, referring to the ethical debate over the use of extraordinary means to sustain life in a hopeless case. "It's impossible in many instances to make a dichotomy between normal and extraordinary care. There's always one more little thing.
"Clearly what we're doing in heroic. Now if I were to go in there and shove a catheter up through his aorta into his heart and maneuver it, I could [keep him going] for a while . . . I could give him something to keep his pulmonary system going . . .
"Most of the time, there's always one other little thing you can do," Hannan explained." But at some point you've got to stop. And that's not a clean line most of the time. It's dirty."
But doesn't the physician have to know there's some hope for the child after all the heroics?
"It's never that clear. There's always a chance. Suppose the cardiologist comes in and says there's a 35 percent chance it's an operable cardiac defect. And Bob [Dr. Robert Albert, a pediatric surgeon] has said, 'Well, I don't know about his kidney's - which is a great big fuzzy gray cloud - 'but we can do this and we can do this and he's got about a 30 percent chance of survival.' And we haven't even said a word about his head," said Hannan. "Suppose we do all this and whittle on him and then find he's got a great big cyst sitting right in the middle of his skull? I haven't even asked that. I just say let's look at what we can see."
In one of his discussions with Hannan, the baby's father had said once, "You have to do all you can do," and "I don't want the baby to suffer." How, Hannan was asked, does he decide what the parents really want?
He must take their statements at face value or it becomes "my personal opinion," he said quite firmly. "In this business I've learned that what they're telling you is the truth. He doesn't want the child to suffer. I don't want the child to suffer either. The whole thing about suffering needlessly . . . What's needless?
"I can't start playing those games," Hannan continued. "I can't say, 'Well, he really wants this or he really wants that.' If I make a decision, I'm going to tell him, 'If this was my child,' or what ever you want to phrase it.
"Now if he says, 'No, you can't [stop trying],' then that's it. I keep trying. Sometimes parents [prematurely] says, 'Why don't you let him go? You really ought to let him go. He's got this, and that, and . . .' They argue it. But I say no, because there is still some possibility I'd like to exhaust. Because once you stop, it's irrevocable. It then all becomes cocktail party talk and opinion. It's an entirely different ball game."
"Theoretically, all this has numbers on it," he continued, "Chances, odds, even if it's one percent or one tenth of a percent or a millionth of a percent. It's still in numerical sequence. But as soon as you start talking about life and death, it's like talking about boys and girls: It's yes or no. It's absolute. So why the hurry [to give up]?
"The only reason is that the baby [may be] suffering. Well, who the hell knows? If they're really worried about it, I can be dope the kid up so he doesn't look like he's suffering. But when it comes to resolving the real life or death question, that don't make no difference.
"You know," Hannan mused, "I'd like to have an ethicist here now just to go through this. Because they're very good at the after-the-fact discussion, and with the cocktail party talk. They have a lot of answers or a lot of questions, and they can turn you upside down and inside out.
"But I never notice them getting out on the firing line. I mean, what would an ethicist do with that question in there?" he gestured toward the nursery down the hall. "I don't want him to suffer but I want him to have every chance. I don't know, it's interesting: Like how many angels can dance on the head of a pin. It makes people too uncomfortable to deal with it. It makes me uncomfortable and I HAVE to deal with it."
By the time Hannan returned to the nursery, Dr. David Harder, the cardiologist called in to examine Baby Boy Alvarez, was standing by the light box examining the baby's X-rays.
"That's the weirdest heart I've ever seen," Harder muttered as Hannan walked up to him.
The two physicians conferred for about 30 minutes, and Hannan got what he thought he would-waffles. Yes, the baby could have an inoperable heart problem, but no, he might not. Yes, the baby could be transferred to another hospital where more extensive testing could be performed on the infant's heart. But transfer might kill him.
Finally the doctors decided nothing would be lost by transferring the baby to examine him further to see if surgery was possible.
By 9 p.m., when Hannan went down to Maria Alvarez's room in the hospital, the transfer had been all arranged. All that was needed was the parent's okay and the baby - now 3 1/2 hours old - would be on his way.
"My husband had already told me what the doctor had told him," Maria would recall later. "When Dr. Hannan came down with the cardiologist each of them explained it in their own way. They told us it was no 100 percent, not even 50 percent chance the baby would live if they took it for a test. They said he could die in the ambulance; he could die in the other hospital; he could die in the test.
"We thought why, if the baby could not live, why make him suffer, if there was no hope at all. So we said, if the baby is to die, it will die in the same place it was born. After we made that decision," the mother continued, "[Hannan] told us that as a doctor and as a father he would make the same decision we did."
"He explained to us he would give the baby 12 hours," said Raul Alvarez, "to see if it got any better."
"Do you know," Maria Alvarex said, "I guess my only fear that evening and that night and even the next morning, was that I was scared, very much scared, that the doctor wouldn't turn the respirator off. I had dreams that I was fighting with Dr. Hannan, trying to make him turn it off.
"What happened was that in my mind I thought of the case of that [Karen Ann] Quinlan. I was so confused. I could see my baby suffering for days and days and they wouldn't know he was suffering. I was so upset.
"I said to Dr. Hannan, 'I want you to assure me that my baby isn't suffering.' He said, 'There's no way I can tell you.' Then he said, 'I want to give him morphine so that way I can be 100 percent sure the baby isn't suffering.'"
Hannan returned to check in on Maria Alvarex around 7:30 the next morning, and then, shortly after noon, Hannan returned for the final consultation.
"I said, "How's the baby?'" recalled Maria Alvarex, "and he said 'It's still the same.' He said, 'It's about time we decide what we are going to do with the baby.'
"We said, go ahead and disconnect the respirator," she continued. "The doctor said, 'That was the decision I hoped you'd make. As a doctor and a human being that was the decision I would make in your case.'"
For Maria Alvarez, age 29, there had never really been a decision to make. "My baby wasn't living," she said. "I do believe the only time he was alive was when he was inside of me. The rest of the time he was just artificially living, and that's not alive.
Hannan then returned to the nursery and wrote the following note into Baby Boy Alvarez's chart:
"Have spent considerable time evaluating baby and speaking with parents. They are very aware of the problems and outlook for survival. We have decided to provide only supportive care and not include respirator or respiratory supplement. Parents have requested discontinuance of heroic support. Hannan."
The nursing notes tell the rest:
12:45: "Ventilator turned off by Dr. Hannan Monitor discontinued by Dr. Hannan. Heart rate dropped below 100 immediately and color became quite dusky."
1 p.m.: "Baby gasped three times between 12:45 and 1 p.m. and heart rate very slow and faint."
1:35 p.m.: No heart rate present. No respirations. Private pediatrician present. Baby baptised."
1:35 p.m.: "Baby pronounced dead by Dr. Javed. Measurements taken and footprints taken. Baby bathed . . . Baby taken to morgue."
Baby Boy Alvarez, baptized Raul in his last minutes, had lived 21 hours and 14 minutes. His mother had never seen him.
"I didn't want to see the baby," said Maria Alvarez, who, unlike her husband, would in the future have pleasant dreams about him."I thought, 'Why see the baby if I can not hold him?'"
At 5 p m., 3 1/2 hours later, Hannan went down to tell Maria Alvarez that her son was dead.
"He came into the room and said, "The baby is dead,'" she recalled. "I said, 'Thank you, Doctor, for telling me.' And he stood there for a few minutes, just looking at me. Maybe he was waiting for my reaction. He looked ver concerned, very worried.
He was worried for us."
"But that the baby had died was very good news," Raul Alvarez said.
"Our tragedy was for the baby to be sick, not for the baby to die," said his wife.
Hannan visited the parents again the next afternoon to request their permission to have an autopsy performed.
Ironically, the autopsy would later show that the Alvarez baby had a basically sound heart. His kidneys, too, appeared to be normal. But no amount of surgery could have saved him, for his kidneys were not connected to anything. Baby Boy Alvarez had no bladder. Instead, he had a cloaca, a combination bladder and bowel similar to that found in birds. His breathing difficulty, it turned out, was caused by severe lung disease.)
Hannan returned to his office, shaking his head, clearly depressed.
"I can do without that," he said, vehemently. "They're beginning to get it all smoothed out and then you come in with that autopsy sheet and it all goes jagged again.
"You know," said Hannan, who had been through similar ordeals about a dozen times, "I have a recurring dream every so often"
"I'm going to Heaven, and as I go through the gates I see what looks like this field of gently waving grass. When I look again, closely, it's babies, slowly undulating back and forth-the babies I've shut off." CAPTION: Picture, Physician places his hand on a premature infant resting in an incubator. Neonatology, or the care of the newborn, is a relatively new medical field. 'Our tragedy was for the baby to be sick, not for the baby to die' By Linda Wheeler-The Washington Post