End of Life, at Birth

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.

About keithbarrington

I am a neonatologist and clinical researcher at Sainte Justine University Health Center in Montréal
This entry was posted in Neonatal Research and tagged , . Bookmark the permalink.

7 Responses to End of Life, at Birth

  1. Absolutely appreciate a different perspective on this issue!

  2. William Meadow says:

    hi Keith;

    i too thought it was a terrible op=ed piece;

    very stylish these days to doubt the enterprise of saving micro premies;

    but very misguided in my view;

    here, attached for you, is a piece i’ve written for NeoReviews — they requested 3000 words on Ethics at the Margins of Viability;

    enjoy!

    b

  3. Thanks for this very poignant piece Keith. I agree that the article”End of Life, at Birth” (what a terrible title) was very negative and the comments even more so. It sounds like a very preterm baby is a negative cost factor. What a terrible way to think about very complex decision-making for families and medical professionals. I also wonder, if a physician would write in the same way about outcomes of children who, due to an accident, become dependent and impaired. Katharina

    • Most of the comments did seem to be from people who think that all preterm babies are very impaired, and that it is very expensive to save them. Both of which are untrue. I think we need to continue to raise awareness of the reality, the NICU is very effective, and very cost-effective. I think most of the commenters would not like to think that applying their logic, they would not be eligible for intensive care themselves if they got sick. Adult intensive care is far more expensive and far less effective!

  4. P says:

    Thank you for writing this! It’s very nice to hear from a neonatologist’s point of view other than the author who wrote the op-ed piece. I too wrote my opinion about it as the parent of a 24w5d preemie here http://handpickedmiracle.wordpress.com/2013/08/11/the-value-of-preemie-life/.

    • I am not only a neonatologist, it is fair to say, but also the father of a premie, whose hand is at the top of my blog.
      I am trying to write a piece about quality of life, what it really means, and the difference between quality of life and the value of a life, and I really appreciated your post. The comments in particular below the post were so negative, many of them have no real knowledge of either the outcomes or the costs of NICU, and have clearly not considered the issues very deeply, but they still feel they need to have their say. I guess that’s the new internet!

  5. Pingback: Posts of 2013 Every Preemie Parent Should Read | Ain't No Roller CoasterAin't No Roller Coaster

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s