No resuscitation for severely premature infants says British bioethics council

Guidelines represent accepted treatment, U.S. ethicists say

A paper released in November by a British bioethics council has generated hot debate and headlines warning "disabled babies to be killed at birth," but the guidelines set out by the Nuffield Council on Bioethics regarding the treatment of babies born severely premature are similar to those observed in many states in the United States.

"I think most neonatologists would agree that the Nuffield report is in line with standard thinking," says Doug Diekema, MD, MPH, an ethicist with the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital. "The controversy has always been over where do you draw the line [when deciding whether to resuscitate very premature babies], and I guess what makes the Nuffield report controversial is that they have tried to draw that line."

The Nuffield Council on Bioethics was established in 1991 to identify, examine, and report on ethical questions raised by advances in biological and medical research. Although the council's recommendations are not binding, it has achieved an international reputation and its reports are influential in shaping health care policy and debate in Great Britain.

The report on extraordinary care for the very premature, "Critical Care Decisions in Fetal and Neonatal Medicine," provoked strong reactions when it was released, but does not suggest any measures that have not already been widely discussed and, in some countries and states, already implemented, according to ethicists.

Treatment vs. comfort care debated

The Nuffield Council's report suggests that extremely premature babies born at 22 weeks gestation or less should not routinely receive resuscitation and intensive care. The standard for babies born at 22-23 weeks should be to not resuscitate unless parents ask that it be done and physicians agree. (See Table, "Nuffield Council Guidelines".)

Such extremely premature births are statistically shown to have a 1% rate of survival to discharge from the hospital. Those who do survive often develop severe disabilities due to their physiological immaturity.

"Natural instincts are to try to save all babies, even if the baby's chances of survival are low," according to Margaret Brazier, a University of Manchester (UK) law professor who chaired the committee that produced the guidelines. "However, we don't think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable."

Despite the evidence of futility in resuscitating very premature infants, Brazier notes in her foreword to the report that, "Writing this report has not been easy," but "any difficulties that we have faced pale into insignificance compared with the heartbreaking choices that parents and professionals have to make in these areas of medicine."

Recognizing the agonizing decisions faced by parents and physicians when a baby is born before 25 weeks, the council framed its guidelines to provide a large "gray area" during which parents' wishes should determine care, according to Steven Leuthner, MD, MA, associate professor of pediatrics and bioethics at the Medical College of Wisconsin in Milwaukee and director of the fetal concerns program at Children's Hospital of Wisconsin.

"I personally look at [the Nuffield study] as not necessarily anything new, but as another group of people who agree with what I tend to agree with, and that is that you shouldn't seriously think about starting resuscitation in a [22-week gestation or less] baby who probably can't survive anyway," he says. "But there is a big gray window where we let parents make the choices."

The third "window," he says, comes at 25 weeks and beyond, "when we owe it to the baby to at least try."

Debate in the United States among neonatologists and ethicists is not usually over whether it is humane to resuscitate babies who stand very little chance of survival, Leuthner says, but when to make that decision.

"These are debated all the time — who should we resuscitate and who should we not?" he explains. "The [American Association of Pediatrics] has guidelines about this, here in Wisconsin we formulated guidelines, and certainly there is published medical literature suggesting cutoffs very similar to these [in the Nuffield report]."

Despite the hue and cry in the British press over what is contained in the report, Leuthner says what the council has proposed "is not a fringe issue at all in neonatology."

In fact, he says, historical guidelines were even more absolute — and likely, less accurate as a means of judging viability.

"Historically, people would make the decisions based on weight. If the baby weighed less than 500 grams, you would provide comfort care and that's all," he explains. "If the baby weighed over 500 grams, you would resuscitate."

Now decisions are based on gestational age, but influenced by guidelines, policy, and case-by-case facts. The Baby Doe law, an amendment to the 1984 federal child abuse law, is another factor. It mandates that all infants should receive treatment unless treatment is deemed "virtually futile" in terms of survival; ethicists, lawyers, and physicians continue to debate whether the law is worded in such a way that parents and physicians have some discretion in deciding whether to give or withhold treatment.

Further complicating the picture is the inaccuracy of predictive methods currently available. Diekema explains that while weight has been rejected as the sole determining factor, gestational age is an imperfect replacement tool.

"The reality is that every neonatologist has seen a baby expected to come out at 25 weeks' gestational age and it comes out considerably further along than that, or considerably less far along than that," he points out.

For all these reasons, Diekema suggests, guidelines should not try to establish a definitive "black line" demarcating an absolute age at which resuscitation should or should not be initiated, but rather, there should be standards established, around which physicians and parents can exercise discretion.

Religious communities respond to guidelines

While some right-to-life and religious groups condemned the report, even saying it sanctions euthanasia, the Nuffield report drew support from British medical groups and religious leaders of the Church of England (Anglican) and the Catholic Bishops' Conference of England and Wales.

"This reaffirms the validity of existing law prohibiting euthanasia, and upholds the vital and fundamental moral principle that the deliberate taking of innocent human life is always gravely wrong," the Church of England and the Catholic Bishops' Conference said in a joint statement. "There is a clear distinction between interventions which are deliberately aimed at killing, and decisions to withhold or withdraw medical treatment when it is judged to be futile or unduly burdensome."

The Nuffield guidelines adamantly state that the "active ending of life" of newborn babies should not be allowed no matter how serious a child's condition.

"The professional obligation of doctors is to preserve life where they can," the authors of the report wrote.

The council's recommendations are that when deciding whether to give life support, physicians should consider parents' views, the likelihood that the treatment will significantly prolong life, and whether the child will be capable of establishing relationships or experiencing pleasure in the future. In comparison, the U.S. Baby Doe law does not take quality of life into account in requiring treatment.

The 278-page Nuffield Council report is available as a free download on-line at www.nuffieldbioethics.org.

Sources

For more information, contact:

  • Doug Diekema, MD, MPH, education director; director of pediatric bioethics fellowships, Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital Research Center, Seattle, WA. Phone: (206) 987-2380.
  • Steven Leuthner, MD, MA, associate professor of pediatrics and bioethics; director of fetal concerns program, Children's Hospital of Wisconsin, Milwaukee, WI. Phone (414) 266-6706. E-mail: Leuthner@mcw.edu.