An Op-Ed piece in the NY Times a couple of weeks ago had that title.
I was rather disappointed by the piece, written by an experienced neonatologist; now I suppose for a piece written for the NY Times the fact that it is a very superficial look at perinatal decision-making is somewhat understandable, she makes some good points, but I think it shows a very old-fashioned approach to the issues.
Take this paragraph:
‘Sometimes, I think we doctors need to do more than inform. On occasion, I’ve offered to make a life-or-death decision for parents. If they agree, they are essentially making the decision, but are shifting the burden to me. It’s harder for parents to say, “I unplugged my baby,” than to let the doctor do it.’
I think if the author really thinks that all the doctor should do is inform, then she is very mistaken. Offering to make life-or-death decisions ‘for’ the parents is also extremely disturbing, especially given the whole tone of the article, which makes me wonder how often such a decision would be a ‘life’ rather than a ‘death’ decision. Does she even make that offer if she thinks the decision should be ‘life’?
The whole model of shared decision-making is missing from this piece; rather than imparting knowledge, these difficult discussions need to be about sharing what is important to the parents and the caregivers, exploring values together, working together over the course of the hospitalization to make the best decisions for the baby. There should be no dichotomy between either just informing and then leaving the parents to it, or making the decision in their place.
The whole tone of the article is very negative about the outcomes of the extremely preterm baby, while noting that ‘many’ extremely preterm babies ‘will need treatment long after birth, sometimes for life, at great financial and emotional cost to them and those around them’ she nowhere mentions that the majority do not. And, just as important, that the majority of those who do have long term impairments find their lives quite acceptable.
She also makes the classic, almost universal, error of talking about “survival or having a moderate to severe neurodevelopmental impairment”. I say that is an error as I don’t know how to interpret those numbers; if the risk of that combined outcome is truly 92% (and I imagine she used the NICHD calculator to come up with that exact number) it means something very different if the risk of death is 2%, but that 90% of babies survive with an impairment; compared to the risk of death is 90% but 2 out of 10 survivors have an impairment. We should avoid giving that number, if parents want an estimate of numerical outcomes, talking about the proportion who survive, and separately the proportion who have serious long term impairments among survivors is much more appropriate.
I also think it is an error to focus on the antenatal consultation as the time to make active treatment decisions. Our predictions are so unreliable that making decisions about life-sustaining interventions, at a variable time before birth, when there are great uncertainties about gestational age, and even greater uncertainties abut fetal weight, is really questionable.
What we do need, and don’t really have as yet is a way to predict survival or impairment during the hospital course. We can calculate the percentage survival for the whole group of preterm babies with each additional day of survival, which shows by the way, that once you are born and survive the first day or so, that gestational age has no influence on survival rates. What we can’t yet do is to predict after each day of additional intensive care, or each additional complication, what is the likelihood of going home.
Many of the comments after the piece are also very negatively slanted, many expressing a belief that all these babies end up dependent for life and profoundly impaired.
There are many parent-of-premie blogs out there, some of which I quietly follow. Several have posted responses to Dr Dworetz’s article. See here, and here, and here, and here and here. Those responses are really worth a read, to get parental feelings about the article; they should make you think, I hope, and take some time to reflect on what we mean by Quality of Life, and how that may be different to the Value of a Life.
These parent websites are very often a good source to reflect on how doctors and families interact, for one example the website/blog “life with jack” has a good post “The doctor is not God” which has a list of things that doctors often predict with great certainty, and then turn out to be mistaken, and how that affects families.