I recently ran across this study in NEJM talking about outcomes for extremely premature infants. Some background: generally in the US hospitals will use intensive interventions to resuscitate and treat premature infants born at around 24 or 25 weeks gestation. Infants younger than 22 weeks of gestation almost all die. In between, however, are a few weeks of extremely premature infants whose prognosis is not very good. A common approach (for about 3/4 of these babies) is to use 'comfort care', which amounts to drying off the infant, wrapping them up, and putting them in their parents' arms until they die (incidentally, I find this one of the most depressing images I've ever thought about). For the remaining 1/4 of babies in this 22-23 week range, intensive care is attempted, with survival rates of around 25% (and survival rates without substantial medical issues of around 15%). This works out to around 5% and 3% of babies born at this age.

The interesting thing about the article I cited above is that it appears that these numbers mask substantial differences between hospitals - some hospitals routinely intervene aggressively, with higher subsequent survival rates (albeit at substantial cost and, admittedly, still a majority of infants dying), while other hospitals almost exclusively choose 'comfort care'. There are also substantial between-country variations - I have heard some physician colleagues of mine speculate that part of the US' surprisingly high infant mortality rates (for a developed country) is due to a more aggressive approach to treating extremely premature infants - generally, they're counted as stillborn (and thus not an infant death) if comfort care is chosen over intensive care.

There are all sorts of interesting angles to look at this, but I'm interested in the ethical one. Say you are either a physician or a parent put in this situation. You do not have time to adequately evaluate the infant's chances before a decision must be made about provision of care. For that matter, there's precious little good data out there that would actually quantify a child's chances anyways - visual assessments are routinely wrong, and there is little else to go on until they start responding to treatment. To make matters worse, gestational age is generally an inexact science based on iffy ultrasound measurements, so a borderline 22 week infant might actually be a more robust 24 week infant. Lastly, there is the obvious risk of substantial disabilities and later health problems due to prematurity (currently, almost half of babies who survive from this early age). If an infant stabilizes but is likely to have absolutely debilitating ailments for the rest of his or her life, parents and physicians must decide whether to discontinue life-sustaining care.


So, a question for all of you: In the absence of a currently well-articulated bioethical rubric for these situations, how do you think parents and physicians should behave? Given no data on likely outcomes and no recommendations from expert bodies on the issue (current recommendations are for a 'consultative process' which more or less means that they're leaving it up to the doctors and parents), how do you articulate an ethical position? Doctors are in a bind - torn between torturing dying infants unnecessarily (at significant emotional costs to parents and doctors, and substantial monetary costs to society) - with a ~10% chance that they won't die but will end up horribly disabled - and withholding care from babies who have a 15% chance (currently) of growing up more or less normal. Parents are rarely in a position to make informed decisions at this juncture, and doctors just don't know what to do. So how do you decide?

This is a very hot topic among neonatologists - I have a friend in the field who recently left clinical practice because she felt doctors were being too aggressive in treatment options. Others feel that the majority of hospitals that use almost exclusively comfort care for these borderline cases are making wildly unethical decisions.

I don't really know how to address this - what do you think?