Annie was interviewed live on air this morning on a CBC radio show called ‘The Current’. She was asked to discuss the NEJM publication from the Neonatal Research Network that I have been blogging about.
I don’t know if this link works outside Canada.
In case it doesn’t here is a summary:
The program starts at the birthday of Dominica, a baby from our NICU born before 23 weeks there is a photo of her, and her Mom, on the CBC web page. There is a brief interview with both her parents, who are grateful they were given the opportunity to have their daughter alive.
Annie then talks about the failings of our current approach to perinatal decision-making, the lack of transparency, the hidden variation from center to center, and the discrimination based on inaccurate gestational ages. She discusses how these things should be open, and be discussed with parents. How we should be making decisions together with parents which are the best for them and their baby, and which should be open to the possibility of active care whenever there are realistic chances of survival.
She introduced the important questions of what gives a life quality, what makes a life worth living, or worth trying to save, and, the converse, what degree of impairment makes a life worse than being dead.
She was asked if having our own very preterm baby changed how she talks to parents, and she said that it made little difference. But that it made her reconsider how we judge the worth of the lives of our patients; that Violette is perfect to us, even if her scores are not perfect, and even if she sometimes doesn’t want to do her homework! (she didn’t actually say that last bit about homework, it’s just in case she’s reading this).
She was followed by another ethicist who made some general points that were reasonable, and some that needed clarification and debate, but this unfortunately isn’t a debate show. He implied, for example, that Annie was suggesting that it is the physicians who take these decisions, which is exactly the opposite of what Annie said and what she thinks. It is in contrast, what the CPS statement actually recommends before a best-guess gestational age of 23 weeks: that parents should not be given an option. He goes on later to contradict himself, saying that it is OK for hospitals not to offer active treatment for some babies, without defining whether parents should know that another hospital, not 2 kilometers away, might be prepared to offer life-sustaining intervention.
He suggested, and I can only agree, that parents should be given the opportunity to talk to other parents, and that the decision of whether a life with neurologic or intellectual limitations is worthwhile should be left to the parents. Of course, putting this into practice is another issue at 2 am in the morning…
He also emotionally loads his responses, by talking about “chances of some kind of more reasonable life”, and only when the hospital decides that these chances are high enough should the parents then have a right to decide. An argument which, as I said, contradicts his points about parental decision making. He is then asked about cost, and his answer shows he doesn’t know the literature, that NICU is far more cost effective than any other form of ICU. He then starts to use highly emotive and inaccurate language about “putting babies through a grueling experience to have a dismal quality of life”, at which point I was tempted to switch off, but I persevered.
The facebook page for the program has a nice tag-line for this show, a quote from Annie “‘I’m advocating that we treat patients so that they have a great quality of life, and a great quality of life is not just IQ.’ Dr. Annie Janvier”