Published online July 3, 2006
PEDIATRICS Vol. 118 No. 1 July 2006, pp. 430-432 (doi:10.1542/peds.2006-1061)

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Advocating for the Very Preterm Infant: In Reply

Joseph W. Kaempf, MD
Mark W. Tomlinson, MD
Departments of Neonatology and Obstetrics,
Providence St Vincent Medical Center,
Portland, OR 97225

In Reply.—

We thank Drs Janvier and Barrington for their interest in our periviability counseling guidelines.¹ Their sentiments highlight precisely why we designed the guidelines—to provide a rational, supportive, and ethical framework for discussion and decision-making that is based on relevant outcomes studies, consensus, and family choice rather than a particular physician's individual experience or opinion. We would respectfully like to address their comments and concerns.

1. They state that an infant's "best interests" must be the guiding principle for intervention. We agree, and our guidelines clearly recognize that parents are the appropriate surrogate decision-makers for the best interests of the infant, a concept well established in bioethical decision-making.^2,3 As neonatologists, Janvier and Barrington surely know that parents of impending extremely premature infants want and deserve clear medical information and guidance that is based on long-term health outcomes. To advocate that we should resuscitate extremely premature infants and then, after the fact, discuss whether NICU care should be continued incorrectly assumes that we can predict long-term outcomes on the basis of early response to therapies. Knowledgeable neonatologists have all had the experience of seeing a 23- to 25-weeks' gestation premature infant look reasonably healthy at 12 to 48 hours of age and then later develop severe complications of prematurity such as periventricular leukomalacia, sepsis, and/or surgical necrotizing enterocolitis, all events that correlate highly with impaired neurodevelopment. Parents need to understand these risks before NICU care is initiated, not after.
   
2. Janvier and Barrington believe that there exists an "obligation of care" for extremely premature infants. We agree, but that obligation can rightfully be comfort care if the parents choose. We, and others,^4,5 believe this to be so because of the high incidence of significant neurologic injury, comorbidities, pain, and suffering seen in 23- to 25-week-gestation infants. The references cited in our article, as well as recent, rigorous, long-term follow-up studies from geographic cohorts,^6,7 demonstrate that 30% of 23- to 25-week-gestation infants suffer severe neurodevelopmental impairment, and another 25% have moderate impairment. We might add that "moderate" impairment generally means a developmental quotient 1 to 2 SDs below the mean, which is hardly a moderate condition to many families. In addition, there is no conclusive evidence that long-term neurologic outcomes have improved over the past 20 years.⁸
   
3. They state that our recommendation against NICU care at 24 weeks consigns infants to "a certain bad outcome." This is a misunderstanding of our guidelines. Although our general consensus does not recommend NICU care at <25 weeks, we do provide NICU care if, after full consultation and discussion, the parents choose so. This is stated clearly in the discussion section of our article. What is troublesome to us, and others,^9,10 is that it is not clear from Janvier and Barrington's letter whether they "allow" parents of extremely premature infants to choose no NICU care. Their model of decision-making (physician prerogative) is not consistent with published guidelines from the American Academy of Pediatrics¹¹ or recent, expert meta-analysis of this topic. Byrne and Goldsmith write, "There is a group of babies in whom outcome may be indeterminate and for whom parental choice should be the main deciding factor (within the limits of medical feasibility). Examples may include infants who are 23 to 25 weeks gestation or younger."¹²
   
4. Janvier and Barrington state that our guidelines do not address individual circumstances (eg, gender, antenatal steroids) that affect outcomes. In fact, our discussion distinctly recognizes this important point (p 28, paragraph 1).
   
5. Last, they misrepresent the long-term outcome data of Saigal et al¹³ by stating that "extremely" premature infants have a good quality of life even when disabled. Saigal et al's now well-described cohort had a mean gestational age of 27.1 weeks. Our guidelines address the appropriate and ethical care of infants 22 through 26 weeks' gestation, not 27 weeks' gestation. Janvier and Barrington would surely agree that long-term health outcomes are quite different at 23 to 25 weeks as compared with 27 weeks.
   

We feel that our periviability guidelines, developed after careful thought, discussion, and consensus, are morally responsible, ethically sound, and clinically valid. We now have had 50 postconsultation interviews with women who have experienced early premature labor and/or birth, and their responses have been overwhelmingly positive. Our counseling process is seen as understandable, consistent, and useful and to be performed in a comfortable manner. We sincerely invite Janvier and Barrington and any other interested health care providers concerned about extremely premature infants and their families to visit and spend time with us at our high-risk obstetric center and NICU. Help us contribute and refine the promotion of justice and health, and assist in the reduction of suffering. We need more thoughtful investigation into how decisions of life support are made and their effects on extremely premature infants and their families.

REFERENCES

1. Kaempf JW, Tomlinson M, Arduza C, et al. Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants. Pediatrics. 2006;117 :22 –29[Abstract/Free Full Text]
2. Tyson JE, Stoll BJ. Evidence-based ethics and the care and outcome of extremely premature infants. Clin Perinatol. 2003;30 :363 –387[CrossRef][Web of Science][Medline]
3. Kopelman LM. Are the 21-year-old Baby Doe rules misunderstood or mistaken? Pediatrics. 2005;115 :797 –802[Free Full Text]
4. Harrison H. The principles for family-centered neonatal care. Pediatrics. 1993;92 :643 –650[Abstract/Free Full Text]
5. Paris JJ, Schreiber MD, Elias-Jones A. Resuscitation of the preterm infant against parental wishes. Arch Dis Child Fetal Neonatal Ed. 2005;90 :F208 –F210[Abstract/Free Full Text]
6. Marlow N, Wolke D, Bracewell MA, Samara M; EPICure Study Group. Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med. 2006;352 :9 –19
7. Mikkola K, Ritari N, Tommiska V, et al. Neurodevelopmental outcome at 5 years of age of a national cohort of extremely low birth weight infants who were born in 1996–1997. Pediatrics. 2005;116 :1391 –1400[Abstract/Free Full Text]
8. Hack M, Fanaroff AA. Outcomes of children of extremely low birthweight and gestational age in the 1990's. Early Hum Dev. 1999;53 :193 –218[CrossRef][Web of Science][Medline]
9. Annas GJ. Extremely preterm birth and parental authority to refuse treatment: the case of Sidney Miller. N Engl J Med. 2004;351 :2118 –2123[Free Full Text]
10. Silverman WA. Compassion or opportunism? Pediatrics. 2004;113 :402 –403[Free Full Text]
11. MacDonald H; American Academy of Pediatrics, Committee on Fetus and Newborn. Perinatal care at the threshold of viability. Pediatrics. 2002;110 :1024 –1027[Abstract/Free Full Text]
12. Byrne S, Goldsmith JP. Non-initiation and discontinuation of resuscitation. Clin Perinatol. 2006;33 :197 –218[Web of Science][Medline]
13. Saigal S, Stoskopf B, Streiner D, et al. Transition of extremely low-birth-weight infants from adolescence to young adulthood: comparison with normal birth-weight controls. JAMA. 2006;295 :667 –675[Abstract/Free Full Text]

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PEDIATRICS (ISSN 1098-4275). ©2006 by the American Academy of Pediatrics

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Advocating for the Very Preterm Infant

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This Article Extract Full Text (PDF) Submit a response Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Citation Map Services E-mail this article to a friend Related articles in Pediatrics Similar articles in this journal Similar articles in Web of Science Alert me to new issues of the journal Add to My File Cabinet Download to citation manager Request Permissions Citing Articles Citing Articles via HighWire Citing Articles via CrossRef Citing Articles via Google Scholar Google Scholar Articles by Kaempf, J. W. Articles by Tomlinson, M. W. Search for Related Content PubMed Articles by Kaempf, J. W. Articles by Tomlinson, M. W. Related Collections Premature & Newborn Related AAP Red Book topics: Yersinia enterocolitica and... Social Bookmarking                         What's this?