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Frameworks are pretty on paper but often do not fit reality: Reply to Lemyre et al.

Journal of Perinatology volume 36, pages 1138–1139 (2016)Cite this article

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We would like to commend Lemyre et al.1 for developing a framework that aims at respecting family values and involvement in the shared decision-making (SDM) process when faced with extremely premature birth (<26 weeks gestational age; GA). Through the implementation of a comprehensive analysis, key areas concerning families and health practitioners were determined when both parties were faced with a decision to initiate intensive or palliative care at the threshold of viability. The study involved a working group including parents and a range of health care professionals (HCPs) responsible for developing guidelines for SDM, which speaks the importance of multidisciplinary perspectives and is evidenced in the resulting framework. Lemyre et al.1 effectively address their reservations with the current approach of predicting infant prognosis based on GA alone, and highlight the many factors impacting outcomes focusing predominately on neurodevelopmental disability (NDD) and how this might impact the quality of life for both the child and the family. The framework developed and the information provided to families takes into consideration many of the concerns addressed in the working group. Still, there are a few key issues that were not addressed and that make the implementation of the framework in real settings questionable.

Despite a cautionary statement in the introduction regarding the importance of consultation being individualized and addressing factors beyond GA (that is, birth weight, gender, singleton or multiple births, presence of congenital anomalies and/or chorioamnionitis and so on), there is no indication of these factors in the table developed to be presented to families or in the list of recommendations during the consultation. Because, one of the primary goals of this framework was to contribute to a paradigm shift that values transparency with families, it is surprising that none of these individual factors are reported and it is taken for granted that the HCPs will have (or take) the time to review the patient’s medical history in preparation for the consultation. But this does not always occur in practice.2

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Authors and Affiliations

  1. Department of Neuroscience, Carleton University, Ottawa, ON, Canada

    K Schibli

  2. Department of Neuroscience and Institute of Interdisciplinary Studies, Carleton University, Ottawa, ON, Canada

    A D'Angiulli

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  1. K Schibli
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  2. A D'Angiulli
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Correspondence to K Schibli.

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Schibli, K., D'Angiulli, A. Frameworks are pretty on paper but often do not fit reality: Reply to Lemyre et al.. J Perinatol 36, 1138–1139 (2016). https://doi.org/10.1038/jp.2016.163

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