By Peter D. Murray
As a neonatologist, I’ve been asked this question countless times. Usually, it arises amid some crisis impacting the baby, through no fault of their own. If I could predict outcomes with 100% certainty, I could offer the distressed parent words of comfort or reassurance in such moments. Since I do not possess the abilities of a modern-day soothsayer, I rely on the best available prognostic data. The question of “Will my baby be disabled?” is quite different from the one I’ve been asked only a few times: “Is my baby disabled?”
The former suggests that the baby might develop a disability at some point in their life, usually when asked to do more developmentally. For example, they may be unable to walk, making them dependent on a wheelchair. However, such a need would only occur once the patient reliably shows they cannot walk, which would be developmentally appropriate for walking. The latter question implies that the baby’s fate is already sealed, and they are disabled. Still, what disability means in the NICU is often seen as a vague, undecided future, while the current state of the patient focuses on their day-to-day condition. Nevertheless, since disability is a probabilistic concept in the NICU, it doesn’t prevent the neonatologist from planning care in the present that considers the possibility of impairment. For example, when life-sustaining measures are withdrawn in the NICU, it is often done out of concern that the neonate might develop a level of disability deemed unacceptable.
That disability should be considered a state of being worth withdrawing life-sustaining measures to prevent aligns with a view that, all things considered, disability is a state of being that ought to be avoided. I cannot say whether all neonatologists agree with this notion, but some certainly do. Others may view disability as a socially constructed state of being, seeking to separate the patient’s biology from their disabled state. Such is, in my interpretation, the view of some proponents of the social model of disability. However, given that neonates are strictly physiologic beings, how can one necessarily separate their biology from their state of being? I submit that one cannot and, at least according to the social model of disability, neonates are not disabled in the NICU.
Nor are they considered disabled under interpretations of the medical model of disability. If one assumes that the medical model suggests the patient cannot achieve a task or state they should be able to, how can this apply to a neonate in the intensive care unit? Many babies cannot eat properly or regulate their temperature, but these are not examples of impairments that qualify as disabilities; instead, they are differences in developmental progress. Therefore, we currently make decisions about withdrawing life-sustaining measures not based on beings who are disabled according to existing frameworks, but on those who are at risk of developing such disabilities according to those very same frameworks.
Consider a comparison from adult medicine. Would a medical intensive care unit (MICU) attending ever consider withdrawing life-sustaining measures from a patient admitted with respiratory failure (thought to be amendable to medical therapy) who is going to develop Huntington’s Chorea? I suggest they would not, unless there was significant physiologic instability that justified withdrawal. The MICU doctor might argue that the patient could recover from the acute illness that brought them to the ICU, and that their potential quality of life before Huntington’s symptoms appear justifies continuing life support. How then can we justify withdrawing such measures from a baby who is otherwise physiologically stable (though reliant on a ventilator, which is developmentally appropriate in many cases), solely based on the likelihood of developing disability due to severe intraventricular hemorrhage, for example?
Often, providers advocate for withdrawing life-sustaining measures based on what they believe is in the best interest of the patient, with concerns about future disability (and quality of life) guiding decision-making. When these decisions are made carefully, they tend to reflect what the family values most. However, a framework that considers parental interpretation of disability, probabilistic predictions of that disability, and physiological instability would better respect the decisions that need to be made in the NICU regarding the withdrawal of life-sustaining measures. The main motivation for this paper was a call to develop such a framework, and seeing it come into being represents the goal of the remainder of my career.
Article: Disability in the neonatal intensive care unit: are current frameworks applicable?
Author: Peter D. Murray
Affiliation: Department of Pediatrics, Division of Neonatology, University of Virginia School of Medicine
Conflicts of Interest: None declared
Social media:
X: Peter_Murray_MD
Web: nicubiomedicalethics.com