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Equity for a Child with Trisomy 21, Autism, Tactile Defensiveness, and Obesity Who May Benefit from a Tracheostomy

February 25, 2022

Treating individuals with disabilities justly is exceptionally important. At times treating similar cases similarly, a common definition of justice, is difficult because an individual’s disability influences their interests and/or the safety and efficacy of the treatment. In such cases, the focus may need to shift from equality to equity; from treating them the same as others to providing them with the same opportunity to benefit.

This month’s Pediatrics Ethics Rounds (10.1542/peds.2021-054469) presents a case involving a 17-year-old young man with Trisomy 21, autism, tactile defensiveness, and obesity who experienced respiratory distress following a diaphragmatic hernia repair that required endotracheal intubation. The medical team is concerned about the ability to safety extubate the patient given his elevated body mass index and considers a tracheostomy. They are however concerned that the patient will not tolerate the device and will need to be sedated and restrained until he loses enough weight to be decannulated.

One of the commentators argues that prior unsuccessful attempts to reduce the patient’s tactical defensiveness suggest that attempts to balance this defensiveness and complications of sedation are unlikely to be successful and concludes that the tracheostomy is morally optional.  Another commentator describes the efficacy of multidisciplinary teams utilizing applied behavior analysis in providing treatment to patients with complex medical and behavioral challenges.  She however notes the scarcity of such teams and the potential utility of transferring the patient to an institution with such a team.

I invite you to read this article and consider what you think is best for this patient as well as what resources healthcare facilities owe to such patients to provide them the same opportunities to benefit from treatments as other patients.

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