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Clinical Decisionmaking

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Parents and health care professionals don't always agree on the desirability of a fragile newborn's future quality of life

When parents have an extremely low birthweight (ELBW; 1,000 grams [about 2 pounds, 4 ounces] or less), borderline-viable infant, they and their baby's neonatologists often face critical, life-threatening decisions. But parents and health care professionals do not always agree about the desirability of certain health states, should the disabled infant live.

Apparently, parents and physicians view mild to moderately disabled health states similarly. In these cases, the children may have learning difficulties at school, require equipment to walk, and/or need some assistance with activities of daily living such as eating or using the toilet. However, health care professionals rated the desirability of severely disabled health states significantly lower than parents and adolescents who themselves were ELBW infants. In these cases, the infant may be blind, deaf, unable to walk, have problems with thinking or learning, and/or require significant help with everyday activities. Adolescents rated acceptability of the most severely disabled states significantly higher than health care professionals, but they provided significantly lower scores than health care providers and parents for health states with milder impairments.

These findings suggest that parents may be the most appropriate people to make decisions on behalf of their infants in the neonatal intensive care unit (NICU), conclude the Canadian authors of the study. They conducted direct interviews of 100 neonatologists from hospitals throughout Canada, 103 neonatal nurses from 3 regional NICUs, 264 adolescents (including 140 who were ELBW infants and 124 sociodemographically matched term controls), and 275 parents of the recruited adolescents. The participants were asked to imagine living for the next 65 years in each of four to five hypothetical health states common to very premature infants. In addition, children rated their own health states—and parents rated the health states of their own children—using a standard gamble technique.

More details are in "Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents," by Saroj Saigal, M.D., F.R.C.P., Barbara L. Stoskopf, R.N., M.H.Sc., David Feeny, Ph.D., and others, in the June 2, 1999, Journal of the American Medical Association 281(21), pp. 1991-1007.

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