A severely retarded 14-year-old boy named John has been in an institution most of his life. Since infancy, he has required 24-hour nursing care, has been unable to move and has spent most of his time lying in a crib.
One day last January, John choked while being fed, stopped breathing and suffered cardiac arrest. For two weeks, he hovered near death in the intensive care unit at Children's Hospital. His mental capacity was that of a one- or two-month-old infant, his doctors said. He weighed just 40 pounds.
He was in such pain and his prognosis was so poor that doctors recommended writing an order in the medical chart stipulating that medical treatment continue, but that if John's heart failed again, he be allowed to die.
Patients and families across the country make decisions every day about how far to carry extraordinary efforts to keep hopelessly ill patients alive. In many places, doctors and families agree to withdraw or limit therapy they believe to be futile. But John's case was different because he has no family--he has been a ward of the District since he was given up for adoption at the age of one.
Children's Hospital has a strict policy of obtaining parental consent before a decision to limit or withdraw life-support therapy can be made. Because of John's unusual legal status, the hospital needed permission from the city government to take such action.
The request was one city officials say they had never faced before. They make two or three routine medical decisions a day for the city's wards, but this request seemed a different issue, raising legal, philosophical and moral questions. The answer was no.
On March 11, after John had suffered a second cardiac arrest and again been resuscitated, Dr. Peter Holbrook, director of the hospital's critical care unit, renewed his request. To the medical staff, it seemed unfair to John to intervene if he suffered another life-threatening complication. "Literally everything we did to him seemed to cause pain," Holbrook said. "I had the feeling that I was continuously inflicting pain on a patient who wasn't benefiting from it."
On March 11, he wrote on John's medical chart: "I have spent much of the day in discussions with representatives of the D.C. government in an effort to clarify John's situation. In sum, I have recommended: 1) no resuscitation should John sustain a cardiac arrest, and 2) draw limits to his therapy so that we do not inflict further pain on John when in fact we can do nothing about his ultimate central nervous situation outcome.
"The D.C. representatives, after consulting with the D.C. corporation counsel, have denied both requests."
Audrey Rowe, the city's commissioner of social services, said agreeing to the doctor's recommendation would place the government in the uncomfortable position of "playing God" and "making life and death decisions."
Rowe felt throughout that for personal religious reasons, she could not make the decision on her own. None of John's relatives could be located. "The way I internalized it was that John was a kid. He still had a chance at life. You had to give him that shot. And if he grabbed hold and went with it, so be it," Rowe said.
"To be quite frank, I felt as though Holbrook was trying to pressure me to make a decision . . . . He started talking to me about the quality of John's life . . . . Also the discussion of cost . . . that the cost that the city is incurring on a daily basis is great, and if there is no likelihood that John's quality of life is ever going to improve, does the city want to commit the cost?
"I said 'Yes. Money is not the issue' . . . . As far as I'm concerned, the city's budget is available for maintaining a person's life."
Holbrook says he mentioned the cost in his discussions with the city in order to get their "attention," but money never was, or was meant to be, a factor in decisions about John's case. Holbrook said his only consideration was the patient's interests, and that the proposal to limit therapy is acceptable practice in most major hospitals. Based on the daily intensive care unit rate, John's five-month stay will probably cost the city between $100,000 and $145,000 in addition to the amount it has expended for his medical care since assuming the costs in 1970.
"I pushed them. I pushed the city to draw lines on John's therapy," Holbrook said. "I took that stand to push the District into confronting the issues . . . . We said, 'We can walk away from John. We can ignore John and let this go. But we'll be back in six months with another patient, so it's necessary to address it.' "
Rowe ordered the hospital to do everything possible to sustain John. At the same time, she agreed to establish a mechanism to handle future cases. Last week officials of the D.C. Department of Human Services drafted a proposal recommending that the city form an advisory panel that would convene on an emergency basis whenever doctors seek authorization to discontinue live-saving therapy for a ward.
Such a panel would be the first of its kind in the nation, according to Alexander Capron, a Georgetown University law professor and director of the recent Presidential Commission for the Study of Ethical Problems in Medicine. Although a small number of U.S. hospitals have internal "ethics" committees that advise doctors and families, there are no similar governmental bodies, Capron said.
D.C. officials said they have been informed that in Virginia, decisions about life-saving therapy for the state's wards must be made by a juvenile court judge, while in Maryland such decisions are the responsibility of the state agency that has the legal custody of the child. Maryland and Virginia officials reached last week could not recall such cases ever arising and could not immediately confirm what their procedures were.
The proposed D.C. panel, consisting of a lawyer from the city, a doctor, a clergyman, a DHS official, and a child-welfare advocate, would have access to the ward's medical records and physicians and would seek a consensus on the ward's "best interest." It could recommend to the proper city official that treatment be discontinued, pursued, or, if there was disagreement, that the case be sent to court.
The proposal, which must be approved by Rowe and probably the mayor's office, is a sensitive one because there appears to be no precedent, and the role of the medical profession in making such decisions is far from clear. Each year in the Children's Hospital intensive care nursery, for example, about 35 to 40 hopelessly ill newborns die after doctors, with parental permission, make the decision to forgo life-sustaining therapy. But other hospitals have different policies, or no policies, and most doctors maintain such decisions are strictly personal matters between them and their patients.
Defenders of the proposal--including doctors at Children's Hospital--say it will ensure that wards' interests are fairly represented. The government accepts the responsibility for such decisions when it becomes the legal guardian for a ward, Holbrook said. Without the panel, according to proponents, such decisions might be subject to the personal whim of a single government employe, or to political pressures, or might not be made at all.
Many minor wards of the city are eventually adopted or placed in foster care. Of the roughly 2,000 chidren now in the city's custody because they have no known parents or relatives who can care for them, 12, including John, are retarded and likely to remain in the government's care permanently, according to officials in the city's Department of Human Services.
Washington also has custody of several hundred mentally retarded adult wards. Officials said they have never been asked to decide whether to discontinue life-saving therapy for any adult wards.
Found to be brain-damaged shortly after his birth, John was committed to the city at the age of one after his mother said she could no longer care for him.
A medical report written in 1981, when John was 12, said: "He looks no more than 4 or 5 years old. Psychologically he is functioning at a severely retarded level. Physically he cannot turn over or sit up. He has no functional motion, no head control . . . . He wears eyeglasses for improved vision but does not focus. He is spoon-fed in upright position with pureed food. He requires restraints in order to sit in wheelchair. He has to be monitored closely . . . ."
Modern medicine could not promise John a meaningful recovery after his cardiac arrests, Holbrook said. John had severe neurological problems, was fed through a tube into his stomach, would probably never recognize the people around him, would never leave a hospital setting, would be dependent on others the rest of his life.
"We were trying very hard to recognize our limitations, just to be human about the whole thing, to say that we can't do everything," Holbrook said.
More than anyone, John's nurses felt they understood his predicament. Several times a day, they had to insert a tube in his throat, suction his lungs, inject medication. He would gag, cough, and though he couldn't talk, the nurses knew it was painful for him because they saw him grimace, shudder and cry silently. The nurses tried to comfort him, but felt they could not substitute for the role parents often play in such situations.
Nurse Emily Gonzales, 25, was frustrated "because, God, you would think: No one would grieve for him except for us . . . if he had died. Or even just causing him the pain: no one would be there to say, 'Should you stop that?' or, 'Do you have to do that?' "
Head nurse Kathleen Hanns said, "It became more and more of an issue because they knew the government had control of the decision over John's life and well-being, and there wasn't a government person" present.
In the weeks after John's second cardiac arrest, Holbrook and John's nurses visited Rowe and made a graphic presentation of John's plight. "The 'quality of life' issue sort of jumped out at you," Rowe recalls. "I could feel myself . . . . thinking, 'What am I doing to this child?' "
Several DHS officials went to see John. "His eyes were open, but we're not sure to what extent he focused," recalls Regina Bernard. "You think about modern medicine. You say . . . . 'Who am I to really make a decision about another person's life?' But then, society has made a decision to tamper with life when you're extending it."
Robert Malson, Rowe's chief policy adviser, remembers feeling: "Science is holding the flesh together but the life is not there.
"We watched it . . . . And the idea of a human being being 'kept alive' while going through this pain--while the parent is the government, and the government isn't outside the door sharing in that painful experience--in my judgment, in many ways, makes us the torturer . . . ."
Although John's status was not changed, it was at that point that Rowe authorized her staff to develop recommendations for future cases. John has since improved slightly and was transferred June 14 to the Hospital for Sick Children in Northeast Washington, where he remains today.
The city, meanwhile, has been working with Children's Hospital and is pursuing its efforts. Rowe said she will solicit the views of religious organizations, child advocacy groups, city officials, and the D.C. Medical Society before giving her final approval to the proposed committee.
Dr. Dennis O'Leary, president of the medical society and a physician at the George Washington University Hospital, said of the proposal: "I don't want to say the city shouldn't be involved . . . but I think it has to be careful in the manner in which it is involved. There are lots of ways to do it wrong, and not so many ways to do it right."