Teach us to outgrow guidelines
In 1998, Norway, like many countries, adopted a national policy to guide decisions about life-sustaining treatment for extremely premature infants. That policy recommended against treatment for babies born before 23 weeks of gestational age, for treatment of babies born at 25 weeks and above, and considered 23-24 weeks a “gray zone” in which treatment would be considered optional. For babies born in the gray zone, the guideline recommended that cases be assessed on an individual basis, “taking into account the child’s vitality and the individual doctor’s clinical judgement.” Ultimately, according to the guideline, the decision about whether to forgo life-sustaining treatment was to be made by the physician. This approach was justified by the belief that “it is humane not to burden parents with the responsibility of making decisions about withholding life-sustaining treatment.” Nevertheless, doctors were advised to consider parental wishes when making such decisions.
Many countries have similar national guidelines for neonatal decisions. They commonly base recommendations about treatment on the baby’s estimated gestational age. That singular focus is a little weird. There is no other clinical situation in which one variable has such an outsized influence on recommendations about life-sustaining treatment. Furthermore, gestational age estimates are known to be imprecise with a margin of error of at least a few days. Guidelines that rely heavily on gestational age thus rely on information that is likely to be both inadequate and inaccurate.
This week, Norwegian child health experts met in Trondheim to discuss whether the 25-year- old guidelines needed to be updated. The topic was controversial and the discussions were expected to be heated. After all, neonatal practices had changed over the intervening decades. Some centers had begun to offer treatment to at least some babies born at 22 weeks. Neighboring Sweden did so routinely and reported that over 50% of such infants survive if they are given intensive care treatment. In addition, over the last 25 years, more and more neonatologists have endorsed the concept of shared decision making by which parents and physicians are partners in decision making.
After a few days of vigorous discussion, the meeting participants concluded that new guidelines were not needed. Many participants felt that guidelines might oversimplify complex situations in ways that do a disservice to doctors, parents, and babies. They could lead to inappropriate decisions and the deaths of babies who could have survived and thrived or to overtreatment of dying babies in ways that would merely prolong dying when there was little hope of long-term survival.
The deliberations in Trondheim are part of a trend. Neonatology may be ready to jettison guidelines. Instead, these experts suggested, neonatal decisions should be made after a careful clinical assessment, a review of outcome data, a discussion with family members, and an individualized clinical judgment about the benefits and burdens of continued life sustaining treatment. If other national societies follow Norway’s lead, it will be a step forward. Neonatal decisions will look more and more like decisions for other critically ill patients. As they should.
The picture I chose to introduce this essay comes from a book by Nobel Laureate Kenzaburo Oe. His earlier book, A Personal Matter, is one of the most profound meditations ever written about the struggles of a parent to understand the implications of the decision to provide or withhold life-sustaining treatment for a critically ill baby. Oe's work implicitly highlights the madness of attempts to simplify these profound, life-altering decisions.