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End-of-Life Decision-Making in the Neonatal Intensive Care Unit: Serving the Best Interests of the Newborn within a Family-Centred Care Framework

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Paediatric Patient and Family-Centred Care: Ethical and Legal Issues

Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 57))

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Abstract

Family-centred care is today the entrenched model of practice in the Neonatal Intensive Care Unit (NICU). Great efforts are made to reduce the negative psychosocial impact on the parents of infants admitted to the NICU and to support them in the care of their infant. Families are viewed as partners in the care of their infant and thus play a decisive role in all decisions regarding their infant, particularly when an end-of-life (EOL) decision is required.

The prevailing standard of judgment for decisions regarding the newborn is that of the infant’s best interests. Despite the subjectivity of this assessment and the fact that it is being done by surrogate decision-makers, it is a useful concept for ensuring that the newborn’s interests remain the focus of attention and are not overridden by other interests. All attempts are made to derive congruency between the views of the rightful decision-makers as to what constitutes the best interests of the infant.

When consensus cannot be easily negotiated, polarization of views between parents on the one hand and physicians and the healthcare team on the other may lead to great stress and conflict. With a structured, shared decision-making process and a nuanced interpretation of both the value and limits of the best interests standard, as well as an appreciation of the importance of respecting parental authority and the expression of their views and values, a consensual ‘good clinical judgment’ decision is achievable. What establishes moral acceptability for the rightful decision-makers in such interactions is not the application of a moral theory or a purely rationalist argument establishing indubitable first principles, but the clarity arising out of a mutually derived decision in which all parties have been empowered, their preferences established, and where dialogue and negotiation have achieved resolution.

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  1. The Hospital for Sick Children, 555 University Ave, M5G 1X8, Toronto, ON, Canada

    Jonathan Hellmann

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  1. Dept. of Bioethics, The Hospital for Sick Children, Toronto, Canada

    Randi Zlotnik Shaul

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Hellmann, J. (2014). End-of-Life Decision-Making in the Neonatal Intensive Care Unit: Serving the Best Interests of the Newborn within a Family-Centred Care Framework. In: Zlotnik Shaul, R. (eds) Paediatric Patient and Family-Centred Care: Ethical and Legal Issues. International Library of Ethics, Law, and the New Medicine, vol 57. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0323-8_14

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