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Phil B.FontanarosaMD, Deputy EditorIndividualAuthorStephen J.LurieMD, PhD, Contributing EditorIndividualAuthor
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.
Gross RH. Treatment Decisions for Seriously Ill Newborns. JAMA. 2000;283(17):2237–2238. doi:10.1001/jama.283.17.2235
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