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June 28, 2000

Informed Decisions for Extremely Low-Birth-Weight Infants—Reply

Author Affiliations

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

JAMA. 2000;283(24):3201-3202. doi:10.1001/jama.283.24.3198

In Reply: We thank Ms Culver et al for their thoughtful reflections on our study. While we cannot comment specifically on their personal experiences, we would like to address several of the points they raise.

Some of our comments appear to have been misinterpreted. We did not conclude that parents are "willing to accept life-sustaining care" for all ELBW infants. Rather, we wrote that parents were "more accepting of the severely disabled health states than HPs [health care professionals]." What this study did not do, and what needs to be done in future research, is to explore the processes by which parents and health care professionals make decisions and the bases on which they do so.

We agree that the scenarios presented in our study describe only the health and functional states of the children and not the dilemmas that a family might face in raising a child with complex disabilities. Clearly, it is not possible to address all such issues in a single study. We believe that more should be done to explore these multidimensional issues, which are part of the realities of families of children with disabilities.

We completely agree about the importance of parents being involved in decision-making for their children's treatment. Our studies show that parents of both ELBW and control infants overwhelmingly (>97%) believe that the final decision regarding life-sustaining treatment should be made by parents, and fewer, although a substantial proportion (ELBW, 66%; control, 77%), support the role of physicians in such decisions.1 It is our perception that parental involvement is currently encouraged to a much greater extent than it was in the past.

We are at a loss to understand why Culver et al feel that we "call into question the very small area of decision-making" currently allowed by the Canadian Paediatric Society2 and the American Academy of Pediatrics.3 In fact, we conclude that "parents are the most appropriate agents" when making decisions on behalf of their infants in the neonatal intensive care unit because there was greater consistency between parents and adolescents than between adolescents and health care professionals in the valuation of the severely disabled health states. We have repeatedly emphasized the importance of parents and health care professionals being aware of the differences in perspectives within and between groups and recommend individualized counseling for parents facing complex decisions about neonatal intensive care.1,4

Saigal  SBurrows  EAStoskopf  BLRosenbaum  PLStreiner  DL Are health professionals and parents consistent in their attitudes towards active treatment of extremely low birthweight infants?  Pediatr Res. 1996;39:278A. Abstract 1650.Google Scholar
Fetus and Newborn Committee, Canadian Paediatric Society, Maternal-Fetal Medicine Committee, and Society of Obstetricians and Gynaecologists of Canada, Management of the woman with threatened birth of an infant of extremely low gestational age.  CMAJ. 1994;151:547-553.Google Scholar
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