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Review on ethics around decision-making - compulsary reading for all NICU staff

Stefan Johansson


If you are to read one paper on neonatal ethics this year, I'd argue that this is the one.

Late last year, John Lantos, pediatrician and a leading medical ethicist, published a review in NEJM on the ethics around decision-making in the NICU. The paper is not open-access... but you can surely get it from within your hospital intranet or your university/hospital library.

We have a fantastic toolbox in the NICU. We can provide live-saving treatments and support. Most newborns in the NICU survive to good long-term health.

However, we also operate in a high-risk environment where some infant may suffer, some infants will die, and some infants will survive with difficult sequele. Which raises the question, by staff and by parents, what is the "right" thing to do in complex situations. When withholding and withdrawing life-sustaining therapies becomes a option to decide upon.

How could we navigate in this landscape? IMHO, the review by Lantos is a good starting point on how to form a local practise.

Lantos shares his reasoning about we cannot "solve" these discussion with "information" as such. Despite how hard we try,  data alone does not lead the whole way. Outcomes is hard to measure, they change over time and we all percieve risks differently. Therefore, information is difficult to standardize. Furthermore, those of us sharing the information will filter our presentation through our subjective selves, coping with opinions, experiences and our expertise in different ways. 

The better alternative around ethical questions is shared decision-making. Two central quotes of the review is that


How can doctors help parents make authentic choices? The first step is the hardest. Doctors must become aware of their own beliefs and unconscious biases. These may relate to disability; to the allocation of scarce resources; to parental ethnic background, educational level, sexual orientation, and socioeconomic status; or to other factors. Such beliefs and biases could cloud physicians’ perceptions of what parents want and need. The second step in helping parents is to learn to ask them open-ended questions about their hopes, fears, goals, and values and then listen carefully for key elements of the answers.

and that


A focus on the microethics of shared decision making may give the impression that any decision is ethically defensible. Such is not the case. The zone of parental discretion is delineated by society’s complex legal, political, economic, and cultural crosscurrents.

Certainly, the future of neonatal care will bring more ethical questions to us. Refined prenatal diagnostics, the down-shifting boundary of viability and new treatment technologies in the future (like the artificial placenta) will impact how we think about fetal life and postnatal life, what is the "periviable grey zone" and what our fantastic toolbox can do.

While improving our skills, from a medical/technical viewpoint, we also need to improve how we cope with the ethics around decision-making processes.

Besides reading the review by John Lantos, I can recommend you to see this lecture from theh #99nicuMeetup in Copenhagen 2019, by Eduard Verhagen.


(Feature Photo : Cropped photo by Liane Metzler on Unsplash)

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