Ethics, Decision making, and Quality of Life

  • Saigal, S, Stoskopf, B. L., Feeny, D., Furlong, W., Burrows, E., Rosenbaum, P. L., & Hoult, L. (1999). Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA, 281(21), 1991-1997.http://jama.ama-assn.org/content/281/21/1991.full

This questionnaire study showed marked differences between doctors and nurses on the one hand, and adolescents (half of whom were extremely low birth weight) and their parents on the other, with regard to whether being severely handicapped was worse than being dead. Health care professionals were much more negative than parents or adolescents, for a whole range of health care outcomes. 

  • Saigal, S, Stoskopf, B., Streiner, D., Boyle, M., Pinelli, J., Paneth, N., & Goddeeris, J. (2006). Transition of Extremely Low-Birth-Weight Infants From Adolescence to Young Adulthood: Comparison With Normal Birth-Weight Controls. JAMA, 295(6), 667-675.  http://jama.ama-assn.org/content/295/6/667.full

As they reach early adulthood, extremely low birth weight infants are transitioning to independence, with very little apparent difference compared to normal birth weight controls.

A completely unbiased evaluation of the recent neonatal literature puts this one in the ‘most important’ group. We showed that with identical, clearly described, outcomes many fewer people would resuscitate a newborn, and especially a preterm newborn, than an older child or adult. Even markedly worse outcomes in older children and adults were preferred over a smaller risk of a poor outcome in the preterm. Dr Janvier has gone on to show the same tendency in the US, Ireland, Norway and Australia.