As several of you may know, I am co-author, with Annie Janvier, of a series of articles examining how our prejudices about the worth of individuals affect decision making in the critically ill. In some of those articles we compare how people (doctors in neonatology, doctors in other fields, medical students, students in anthropology, ethics or law) say they would intervene when given certain information about the patient (see references at the end of the article).
We have shown, for example, that people are much more likely to intervene for a patient with a particular chance of survival and a particular chance of long term disability if they don’t know that the patient is a premature baby. Once informed that their patient is a ‘premie’ the wish to intervene goes way down (that’s the reference from Acta Paediatrica)
We also compared attitudes toward resuscitation of a hypothetical series of patients, and found that the premie, and to a lesser extent even the full term newborn were devalued compared to older patients, even compared to a baby of 2 months of age (the 2nd and 3rd references are to that study).
In that series of studies the comparison case of the 2 month old infant was an infant with meningitis. We based our survival and outcome statistics for that case on what data were available at the time, we were using data regarding outcomes of group B streptococcal meningits, but didn’t actually use the species name in the questionnaire.. A new study confirms that we were in the right ball-park. (Libster R, Edwards KM, Levent F, Edwards MS, Rench MA, Castagnini LA, et al. Long-term Outcomes of Group B Streptococcal Meningitis. Pediatrics. 2012;130(1):e8-e15. http://pediatrics.aappublications.org/content/130/1/e8.long) About one half of the survivors of neonatal group B strep meningitis have no appreciable deficit, and among those with long term problems, about half have moderate and about half have major deficit; very similar to the impact of severe prematurity.
This confirms how much brain injury a GBS meningitis may cause, unfortunately perinatal prevention strategies will not have much effect on this, as most meningitis from GBS is late onset disease, and thus not acquired perinatally in general. Most of these children will be too young to get protection from postnatal immunization, so other prevention strategies such as maternal immunization will be required.
To return to the studies by Annie Janvier, the same questionnaire, or variants of it, has now been used in studies in Australia, the USA, Ireland, Norway and Italy. What is remarkable to me is how similar the results are in those very different countries with different cultural and religious realities. (There are some differences, but they are relatively minor). The major finding has consistently been that physicians in general find it to be in the best interests of the very preterm infant to be resuscitated, nevertheless they are still prepared to let the baby die if the parents request it. What is it about the preterm baby that leads physicians to violate the best-interest principle? Annie is still investigating this, but we think there are 2 reasons, preterm babies (and to a lesser extent all newborns) are not seen as being separate human beings in their own right, especially when we are discussing resuscitation immediately after the baby has left the mother’s body. There seems to me to also be a desensitizing effect which results from the position statements of medical societies, those societies and learned bodies have given doctors the right, the obligation even, to ask parents whether we should resuscitate, even when it is in the child’s best interest to be resuscitated.
Maybe it is time to reconsider this approach, and find a better way to respect the rights of families, including the baby.
Janvier A, Lantos J, Deschenes M, Couture E, Nadeau S, Barrington KJ: Caregivers attitudes for very premature infants: What if they knew? Acta Paediatr 2008, 97(3):276-279.
Janvier A, Leblanc I, Barrington KJ: Nobody likes premies: The relative value of patients’ lives. J Perinatol 2008, 28(12):821-826.
Janvier A, Leblanc I, Barrington KJ: The best-interest standard is not applied for neonatal resuscitation decisions. Pediatrics 2008, 121(5):963-969.