This Ethics Rounds considers the benefits and burdens of a potentially temporary tracheostomy in an adolescent with autism and severe tactile defensiveness.

Commentators discuss the case of an adolescent with trisomy 21, autism, severe intellectual disability, tactile defensiveness, severe obesity, and obstructive sleep apnea who develops postoperative respiratory failure after a hernia repair resulting in endotracheal intubation and mechanical ventilation. A tracheostomy is recommended, which is hoped to be temporary if the patient loses weight. The commentators consider the ways in which the patient’s tactile defensiveness potentially alters the risk/benefit ratio and the potential harms of prolonged sedation or physical restraint. They also describe the specialized care that may benefit the patient and the possibility of transferring the patient to an institution with subspeciality, multidisciplinary behavioral care. The commentators generally agree that deciding to proceed with the tracheostomy or with comfort-based care is within the discretion of the patient’s parents. Health care should be provided in a nondiscriminatory manner. Individuals with disabilities should have equitable access to treatment; additional treatment may be necessary to provide fair access to opportunities. Sometimes, however, an individual’s disability is relevant to the potential benefits and detriments of a treatment. This month’s Ethics Rounds considers the case of an adolescent with trisomy 21, autism, and severe intellectual disability who might benefit from a temporary tracheostomy but who also might not tolerate the device.

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