Disability in the neonatal intensive care unit: are current frameworks applicable?

Abstract

Decisions for patients in the neonatal intensive care unit (NICU) are made under the auspices of the shared decision-making model, which uses the best interests standard as a guide. Decisions made regarding the withdrawal of life-sustaining measures (WLSM) are also made using the shared decision-making model with attention to either physiological parameters indicative of survival or the potential for disability. The two dominant frameworks for considering disability are the medical and social models. At its core, the medical model views disability as something broken within the person, something in need of being fixed. On the other hand, the social model of disability asserts that disability is a socially constructed process consisting of a multitude of barriers encountered by people with various impairments. The social and medical models of disability fail to represent disability in the NICU accurately. The former neglects the biological aspect, as a neonate in the NICU is primarily a physiological being. In contrast, the latter overlooks the possibility that the neonate may not yet be impacted by their impairment and, therefore, would technically not be considered disabled per specific criteria outlined in the medical model. An alternative framework that incorporates the neonate's current medical requirements in conjunction with the prognostication of disability as a method by which parents might make decisions regarding WLSM is desperately needed.