Who is to decide what to do at the limit of viability?

Posted October 10, 20231 yr

This opinion article by Prof Hugo Lagercrantz, also editor-in-chief of @Acta Paediatrica , came on my radar.

It is about how to approach infants born at the viability limit (i.e. 22 weeks). The article is in Swedish, but Google translate may help of you are interested to read through. https://www.svd.se/a/mQ929l/hugo-lagercrantz-hur-pass-tidigt-fodda-ska-vi-forsoka-radda

Prof Lagercrantz's takehomes are:

NICU care and post-NICU care of these infants requires a national strategy
in addition to health care providers (doctors specifically!), philosophers, theologists, paralegals and brain researchers should contribute in writing such a national strategy

I would like to add, parents should also be included in such a process!

As of now in Sweden, we have a national guideline from 2016 about referral to university hospitals from 22+0 and onwards. I would argue this document is a good start, but it lacks several aspects, for example when/how to withhold or withdraw care.
This document is currently being revised, hope it will be communicating a wider approach to this difficult question.

Would be great to learn how you base decision at the border of viability? Who decides what and when?

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October 16, 20231 yr

Our general approach is to counsel on the range of expected outcomes and allow parents to decide on whether to resuscitate. Key barriers we up against are getting OB to give steroids, achieving consensus on what a resuscitation at that age looks like (Many of my partners offer a "trial of ventilation", some insist on running a full code if they are going to try at all).

I think the much more interesting question is under what circumstances it is permissible for the family to request palliative extubation/withdrawal of life sustaining interventions, assuming the child has made it to the ICU.

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October 19, 20231 yr

A seminal issue that should be revisited every two or three years due to technological evolution. The advent of AI support and the artificial womb will undoubtedly change the pro/con arguments.

October 19, 20231 yr

Determine the limit of neonatal viability is desirable to avoid interventions that are costly, painful and unnecessary in the child who has no chance of survival. However, setting a threshold of viability is a major chal- lenge because it is uncertain which extremely premature newborn may have a reasonable chance of survival.

Despite improvements in neonatal care in recent decades, extremely preterm infants continue to be at high risk for mortality and morbidity, including neurodevelopmental disability.
The establishment of a limit of viability remains a complex and controversial issue, which must be based on multiple factors, besides gestational age, and which varies widely depending on the environment and the specific circumstances of the baby's birth. The uncertainty about the course of extremely premature babies makes it difficult to establish an accurate prognosis.

I think that family participation, along with well-founded and honest information from healthcare personnel, is currently the preferred model for decision-making.

The American Academy of Pediatrics statement on prenatal counseling recommends that decision-making be individualized and family-centered for deliveries between 22 and 24 weeks of gestation, taking into account fetal and maternal conditions and parental beliefs.

The hospitalization of extremely premature babies will invariably be very prolonged and poses many challenging situations for parents. Ethical principles must guide every action carried out by health professionals during this extensive stay. At the margins of viability, the interaction between doctors and families, in addition to being a great challenge, is an opportunity to help parents, treating them with understanding, empathy and honest communication.

https://doi.org/10.1016/j.clp.2017.01.009

https://doi.org/10.1542/peds.2015-2336