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May 3, 2000

Treatment Decisions for Seriously Ill Newborns

Author Affiliations

Phil B.FontanarosaMD, Deputy EditorIndividualAuthorStephen J.LurieMD, PhD, Contributing EditorIndividualAuthor

JAMA. 2000;283(17):2237-2238. doi:10.1001/jama.283.17.2235

To the Editor: In his editorial1 regarding treatment decisions for seriously ill newborns, Dr Fost distorts our prior study2 by claiming that "a major medical center reported that standard treatment was withheld from more than half of a cohort of infants referred with spina bifida." Our process was undertaken only after several mothers of older children told us that they wished that someone had taken the time to discuss with them the long-term implications of performing surgery on their newborns with spina bifida. The common theme was that if they had been better informed, they would never have agreed to the surgery. We thus set up a program to inform parents, to the best of our ability, of the outlooks for their infants both with and without surgery.

These decisions were not, as Fost states, "driven by directive counseling by the infants' physician, with or without the consent of the parents." Our work has nonetheless been subject to a number of such accusations, to the extent that some of us subsequently became defendants in the Federal Court of Western Oklahoma, where we were charged with malpractice and discrimination against handicapped newborns, among other complaints. The discrimination charge was dismissed by the judge, and the other charges were dismissed by the jury.

The outlook for newborns with deficiencies of various causes certainly has changed in the 20 years since our program was in effect. However, as Fost noted, "A prolonged history of what is now perceived as serious undertreatment of infants with reasonable prospects for living a meaningful life was replaced by an era of serious overtreatment." The challenge is obviously to find a reasonable middle ground between the 2 undesirable extremes.

Fost also touches on the question of how many societal resources should be allocated to the care of "its most handicapped citizens." Proper care is expensive, a distasteful but indisputable fact. In many cases, children with severe disabilities will require expensive medical and social support into adult life, perhaps after the death of their parents. Are we as a society willing to provide this support? It is also interesting to me that ethicists seldom consider the plight of such infants in developing countries, where financial considerations essentially mandate nontreatment of all such newborns.

I do not miss being part of this agonizing decision-making process with grieving parents. It was difficult and heartbreaking. There was much I learned from those parents that renders theoretical discussions on the subject rather prosaic. I can say confidently that parents do want all the information they can get and, for the most part, will try to do what is best in quietly heroic ways. Sometimes it is difficult to provide an accurate prognosis; we can only do our best with the available information. Under these circumstances, those who insist on aggressive intervention for such infants bear a direct obligation for their lifelong care and nurture.

Fost  N Decisions regarding treatment of seriously ill newborns.  JAMA. 1999;281:2041-2043.Google Scholar
Gross  RHCox  ATatyrek  RPollay  MBarnes  WA Early management and decision making for the treatment of myelomeningocele.  Pediatrics. 1983;72:450-458.Google Scholar