PEDIATRICS Vol. 118 No. 1 July 2006, pp. 429-430 (doi:10.1542/peds.2006-0992)
Advocating for the Very Preterm Infant
Annie Janvier, MDKeith J. Barrington, MB, ChB
Department of Pediatrics,
McGill University,
Royal Victoria Hospital,
Montreal, Quebec, Canada H3A 1A1
To the Editor.—
Kaempf et al1 have presented a hospital-based guideline designed to reduce "variability by call schedule" in counseling and decision-making practices for resuscitation of extremely preterm infants. Although this indeed is an important goal, we were disappointed that the guidelines seem to fail in many ways to adequately reflect the ethical duty of the perinatal team to the infant about to be born. Indeed, the article seemed to focus more on diminishing variability between neonatologists than on advocating for a vulnerable patient. Although the fetus may have limited rights (or, in Canada at least, virtually no rights), once born the infant has a right to be treated as an individual to whom there is an obligation of care, and his or her best interests must be the guiding principle for intervention. The standard neonatal resuscitation text used in North America states: "The ethical principles regarding resuscitation of newborns should be no different from those followed in resuscitating an older child or adult."2 This by no means signifies resuscitation at all costs but that we should treat infants with the same ethical principles that we do older children and adults. We conclude, after reading the Kaempf et al article, that the principles being applied for resuscitation of the extremely preterm infant are very different than those that are commonly applied for older individuals.
By stating that the majority of medical staff members do not recommend NICU care for an infant born at 24 weeks' gestation, the team is consigning infants, a substantial proportion of whom would have had a good outcome, to a certain bad outcome. Kaempf et al may have fallen into a trap that has often caught others—that preterm infants are not considered to be persons and, thus, are not treated in the same way as a larger patient. They are implying that it is perfectly acceptable to offer palliative care if 50% to 70% survival rates and a 12% to 25% chance of severe disability are anticipated.3 A 1-month-old infant with group B streptococcal meningitis4 or a 50-year-old neonatologist with an extensive hemorrhagic stroke5 would be likely to have immediate resuscitation and institution of care without any discussion of withholding intervention despite broadly similar risks of death or disability. It is unclear to us why an infant and his or her parents are not offered a chance of survival in a situation in which an older child or adult would be actively treated without a question asked about the remote possibility of not instituting care. We agree with a spokesman for Bliss, a premature infant charity in the United Kingdom, who recently stated, "Decisions as to what course of treatment is appropriate should be based in the individual circumstances of each baby rather than a blanket policy of not treating patients born at less than a certain gestation.... We might as well have a policy of not treating victims of car crashes which occur at over 50 miles an hour, or denying medical services to those over a certain age."6
These guidelines do not address many of those individual circumstances affecting outcomes of which parents should be informed and that have major impact on the ethical acceptability of withholding intensive care. For example, a girl born at a perinatal center at 24 weeks' gestation weighing 840 g after 48 hours of antenatal steroids has a much better chance of survival with a good outcome than a boy without these good risk characteristics. Treating both as if they have the same risks is inappropriate. Doyle et al7 have shown that the survival rate at the same gestational age can change from 50% to >80% depending on the combinations of such factors. Furthermore, the pessimistic assessment of the medical and nursing staff toward these patients is not new and not shared by the parents.8,9
The frequency of impairment has been distinctly overestimated by some of the research that has analyzed outcomes far too early in the infants' lives.10 Only half of infants who are thought to have developmental delay at 20 months are cognitively impaired at school age. These overestimates of poor outcome are presumably the source of much of the information used by Kaempf et al in constructing their outcome grid.1 Furthermore, infants who were extremely preterm and survive have a good quality of life and adapt well even when disabled.11 This does not mean resuscitating always and at all costs, but it gives us the responsibility of remaining vigilant to our own biases. Consensus is not always a good thing.
A transparent, consistent, and compassionate approach to counseling in this situation is clearly an important goal, but we see no reason why we should not use the same ethical reasoning for nonresuscitation and compassionate care of newborns as we do for older individuals and avoid discrimination on the basis of size or gestational age. We are concerned that the neonatal community may have accepted thresholds for nonintervention based on survival, morbidity, and cost-effectiveness that would have been unacceptable in older people
We are a couple of neonatologists who are also parents of an extremely preterm infant girl, born last year at <25 weeks' gestation. Unless we misread the article by Kaempf et al, we would have been told at their hospital that most of their colleagues were not in favor of providing care to our daughter. Every day that goes past we are grateful to our colleagues here for a different, realistic, and nonbiased approach.
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[Abstract/Free Full Text]
PEDIATRICS (ISSN 1098-4275). ©2006 by the American Academy of Pediatrics
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- Advocating for the Very Preterm Infant: In Reply
- Joseph W. Kaempf and Mark W. Tomlinson
Pediatrics 2006 118: 430-432.[Extract] [Full Text]
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