Abstract
Autism spectrum disorder (ASD) affects an estimated 1 in 54 children aged 8 years in the United States (Maenner MJ, Shaw KA, Baio et al., 2020). For many of these children, there are concomitant eating and/or behavioral challenges that can make managing their nutritional health challenging. This commentary responds to a particularly challenging case in which a pediatric patient with ASD presented to the local hospital’s emergency department with severe weight loss and malnutrition.
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Notes
A pseudonym has been used and details of this case have been altered to protect the patient’s identity.
Indeed, by the time the hospital’s clinical ethics team was consulted, Levi had not received any medical treatment—not even a blood test or monitoring of his blood pressure—for several days, due to concerns that any attempts at medical intervention will cause him to resist, thereby causing harm to himself and/or staff members.
Option Two would involve sedation during the actual placement of the PEG tube. However, because this sedation had a discrete end point and would thus be temporary (lasting under an hour), we did not find it to be ethically fraught in the same way that a longer and indefinite period of sedation is. We found Levi’s initial diagnostic endoscopy morally unobjectionable for similar reasons—it involved a shorter (and much more predictable) use of sedation, and the fact that it was diagnostic, as opposed to therapeutic, meant that it had a clear endpoint. In addition, there was no real alternative to the diagnostic upper GI endoscopy that would allow the medical team to obtain the necessary medical information, and there was no feasible way to perform the diagnostic endoscopy without sedation. In contrast, there was a feasible alternative to sedating Levi for the therapeutic purpose of providing nutrition.
I am grateful to an anonymous reviewer at HEC Forum for making this point and pressing me to think more about the relationship between language and understanding in this case.
Again, I am grateful to an anonymous reviewer for this point.
References
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Acknowledgements
I am grateful to Lisa Campo-Engelstein, Wayne Shelton, and an anonymous reviewer at HEC Forum for helpful feedback on an earlier version of this paper.
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Bunch, L. Forced Nutrition of a Pediatric Patient with Autism Spectrum Disorder. HEC Forum 33, 393–400 (2021). https://doi.org/10.1007/s10730-020-09418-4
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DOI: https://doi.org/10.1007/s10730-020-09418-4