There is no decision more agonizing for parents or physicians than the decision to withhold life-sustaining medical care from a severely ill newborn child.
Parents wracked with guilt and grief often receive conflicting and confusing advice from well-intentioned friends, relatives, nurses and physicians. It's hard to know what is best for the baby.
But in more and more hospitals around the country, parents and physicians are receiving guidance on this complex ethical issue from infant bioethics committes.
Ethics committees, typically composed of nurses, physicians, disability specialists, community representatives, attorneys, social workers, members of the clergy and ethicists, don't replace the family and physicians as decision makers, but they can evaluate treatment options from different perspectives and help focus on the course of action that is in the baby's best interests.
For example, the Georgetown University Hospital infant bioethics committee was once convened at the request of physicians to review treatment options for a very ill baby girl, born 15 weeks early and weighing a little under two pounds -- less than one fourth the size of the average full-term infant.
At birth her parents were told their daughter was in for a difficult time, but everything possible would be done for her and only time would tell if she would survive. Over the next few weeks it became clear to both the physicians and the parents that this baby was not going to be one of the lucky ones.
The baby, who from birth had needed a mechanical respirator to help her breathe, had several bouts of infection and developed permanent lung damage, kidney failure, and severe bleeding into the cavity of the brain and the brain tissue, causing permanent brain damage.
One day the nurses noticed the baby was no longer able to breathe on her own at all without the respirator. The once-active infant lay still, her heart kept pumping, primarily because of the action of the machine to which she was tethered.
It was time to make a decision -- perhaps the most painful in a long series of medical decisions her parents and physicians had had to make since the tiny infant was born.
As the physicians saw it, says Dr. K. Siva Subramanian, chairman of the infant bioethics committee and director of neonatology at Georgetown, they had three options: They could continue providing aggressive care, which they considered futile in this case, they could maintain respirator support but make no effort to revive the baby if her heart stopped beating spontaneously, or they could disconnect the respirator.
As is routine at Georgetown, they took these three options before the ethics committee.
Sometimes there are sharp disagreements among committee members about the appropriate steps to take, and reaching a consensus can involve heated discussions and long and frequent meetings. "In this case it was very obvious that the baby was, for all practical purposes, dead, and that it was only the machine that was keeping her heart beating," Siva Subramanian recalls.
The committee members were unanimous in recommending to the baby's physicians that life support could be withdrawn.
The baby's parents, painfully aware of their daughter's downhill course over the last several weeks, agreed. The baby's heart stopped beating as soon as the respirator was removed.
The notion of hospital ethics committees has been around for more than a decade, but the trend picked up momentum following the highly publicized death in April 1982 of "Baby Doe," an infant boy with Down's syndrome and a surgically correctable malformed esophagus whose parents dedided to forgo surgery and artificial feeding.
The baby's death and the public outcry that followed prompted many, including physicians, advocates for the rights of disabled persons and the federal government, to take a second look at the way medical decisions are made in the newborn intensive care nursery.
The following year, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research recommended that hospitals establish ethics committees to review decisions to withhold or withdraw life-sustaining medical care.
That recommendation was subsequently endorsed by the American Academy of Pediatrics and other medical groups.
The federal government has recommended that hospitals establish infant bioethics committees, and it provided model guidelines published in the April 15 regulations that implement the Child Abuse Amendments of 1984, often referred to as the "Baby Doe Amendments" to the Child Abuse Prevention and Treatment Act. The amendments require state child protective agencies to investigate reports of alleged medical neglect of handicapped infants.
"Three years ago," says Dr. William B. Weil Jr., chairman of the Academy of Pediatrics' infant bioethics task force, "less than 2 percent of hospitals had ethics committees. Our estimate is that since then there's probably been a 10- to 20-fold increase."
Infant bioethics committees serve as consultants during the medical decision-making process about a range of ethical issues, leaving the final decision about a baby's treatment to parents, in consultation with the baby's physicians.
The committees also serve as educational resources for hospital staff and patients' families, and develop hospital policy and guidelines for patient care.
Someday, all hospitals will have ethics committees to review treatment decisions for patients of all ages, but right now most of the attention is being directed toward establishing more specialized infant bioethics committees to oversee the care of severely ill newborns, Weil says.
Last summer an Academy of Pediatrics survey of 710 hospitals with newborn intensive care units found that of the 426 hospitals that responded, a little more than half had working bioethics committees and the remainder were considerng establishing them.
In the District, hospitals with infant bioethics committees include Children's Hospital National Medical Center, Howard University Hospital, George Washington University Medical Center, District of Columbia General Hospital and Georgetown University Hospital.
Columbia Hospital for Women and Washington Hospital Center both have hospitalwide ethics committees.
Increased technical capabilities that allow physicians to prolong the life of extremely ill newborns, sometimes indefinitely, have made the issues surrounding life and death decision-making more complex, and ethics committees can point out the ethical implications of applying or withholding available medical technology, says Dr. Robert H. Parrott, senior vice president of academic medical affairs at Children's Hospital and a consultant to the Academy of Pediatrics infant bioethics task force.
In some cases, physicians and families just want reassurance from the committee that their decisions are ethically sound.
In one instance at Children's, the health team caring for a very ill newborn came to the conclusion that they had gone well beyond what was appropriate for the baby. The baby's family, however, wanted aggressive care continued.
After reviewing the case the ethics committee concurred with the health team. The parents, who were included in committee discussions of the case, subsequently changed their minds and agreed that continuing maximum life support measures was not helping their baby, but only prolonging its suffering.
"Parents often feel guilty -- even though they shouldn't -- after the birth of a seriously ill or malformed baby. They feel they need to do everything possible to help their baby and sometimes that goes beyond what is medically or ethically reasonable," Parrott says.
Ethics committees can play a valuable role in providing parents with a consensus opinion from people with different perspectives and in helping parents and physicians focus on the decision that is best for the baby, says ethicist Laurence McCullough, a senior research scholar at the Kennedy Institute for Ethics at Georgetown University, and a member of the hospital's infant bioethics committee.
Once it becomes clear that a baby is dying and that further life support is futile, the ethics committee's major obligation is to the baby's parents, he says.
"Parents need to know they were good parents. An ethics committee review can help assure parents that they have done everything for their baby that good parents should do," says McCullough, who is also an associate professor of community and family medicine at Georgetown.
"And that may take time. Parents may want their baby kept alive while they come to grips with this," he adds.
At Howard University Hospital and at many other hospitals around the country, the committee concept has been applied in the past by convening consultations with appropriate specialists on an ad hoc basis. But, says Dr. Melvin Jenkins, chairman of pediatrics and a member of the infant bioethics committee at Howard, "we can evaluate our policy and keep in touch with programs at other hospitals more effectively with an ongoing committee."
Howard's committee has recently been established but as yet no cases have been referred for review. Jenkins says decisions to withhold or withdraw life support from very ill and dying newborns have to be made about once a month at that hospital and, in the future, all such decisions will go before the committee routinely for review.
Almost everyone appears to agree that infant bioethics committees have the potential to improve the ways life and death decisions are made in intensive care nurseries. But, as Weil points out, these committees are relatively new and there are some concerns about how they will ultimately function.
Some physicians are concerned that the committees will intrude into the patient-physician relationship and usurp decision-making power that rightly resides with families.
Others are concerned that committee members may not maintain confidentiality.
And some groups have expressed concern that the committees will serve as "whitewash committees" by routinely advocating whatever position is taken by the physicians.
While not denying that these concerns about these potential problems are valid, Weil points out that there is no evidence so far that they actually occur. He said most parents have indicated that committees have been helpful to them by sorting out conflicting and confusing information and assuring them that they did the best they could for their baby.