Communicating with parents, and decision making for the extremely immature infant

The other two articles that I mentioned in the last post, from the new issue of Seminars in Perinatology, were written to discuss a framework for decision making for the extremely immature infant. (Dupont-Thibodeau A, Barrington KJ, Farlow B, Janvier A: End-of-life decisions for extremely low-gestational-age infants: Why simple rules for complicated decisions should be avoided. Seminars in Perinatology 2014, 38(1):31-37) and the second more generally about patterns of communication with parents of critically ill infants around critical decision making (Janvier A, Barrington K, Farlow B: Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Seminars in Perinatology 2014, 38(1):38-46.). 

Annie Janvier is the responsible author for both, the first was written with one of our ex-fellows currently doing further training in pursuit of a PhD in clinical ethics in Chicago, who is the first author. Both were also written in collaboration with a parent representative, Barb Farlow.

The first is, I think, an antidote to the CPS statement, which, in contrast to that statement that I have heavily criticized on this blog, promotes a nuanced and individualized approach to decision making, avoiding simple labels, encourages the investigation and integration of the family’s values, and, I hope, advocates for the best interests of the baby. Doing all of that in just over 5 pages of text means that necessarily there are simplifications.

We also felt we didn’t have enough room to talk about the process of communication, hence the second publication; we tried to create a mnemonic to help people remember some of the basics that should be integrated into the conversations with the families. We modeled this a bit on some mnemonics that have been developed for helping medical personnel to give bad news, (which include SPIKES ABCDE SAD_NEWS and others) and which seem to help to give the personnel a framework for an interaction which is more humane. The mnemonic we came up with was “SOPBPIE” which is really Annie’s invention (I had a better one but I was overruled!) We tried to base the guidance on published data as much as possible, but there is little that can be used to evaluate what are the most important parts of these conversations to parents, how best to present the options, and so on. Some of the suggestions will seem to be self-evident, but many of us can relate circumstances in which basic courtesies, and giving time for the parents to express their own hopes and fears, have been forgotten.

I hope the readers of this blog and of the journal will find these articles helpful, it would be great if we could do some empirical research to find out which items help parents to make the best decisions for their families, and to be comfortable with the decision that they have made.

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.

One Response to Communicating with parents, and decision making for the extremely immature infant

  1. “Precise guidelines based on imprecise data are not rational. Gestational age-based guidelines include an implicit judgment of what is deemed to be an unacceptably poor chance of “intact” survival but fail to explore the determination of acceptability. Furthermore, unclear definitions of severe disability, the difficulty, or impossibility, of accurately predicting outcome in the prenatal or immediate postnatal period make such simplistic formulae inappropriate.”
    THANK YOU. I am in acadamia and so I read many abstracts. It has been a while since an abstract got me this excited. While I am not in medicine or ethics, I found myself saying to every sentence “YES!” and “That’s what _I_ was thinking, too!” Thank you for working to define boundaries and terms for viability issues.
    I am a parent of a baby born at 23 weeks gestation. I am a highly educated woman married to a man with a PhD. I had a fantastic pre-birth consult and had experience working with adults with disabilities. In this sense, I was more informed than most parents.
    Since my son’s birth, I have discovered that I was lucky in the quality of consult I received. Thank you for what you are doing to help define standards of care in such difficult to navigate waters.

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