Obstructive Sleep Apnea in a 17-Year-Old With Profound Cognitive Impairment

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* Abbreviations: CPAP — : continuous positive airway pressure AT — : adenotonsillectomy OSA — : obstructive sleep apnea For children with cognitive impairments who develop obesity and sleep apnea, the treatment options are not good. Adenotonsillectomy sometimes improves symptoms, but if it does not, then home continuous positive airway pressure (CPAP) is the only option. However, CPAP requires the patient’s understanding and cooperation. If the patient does not have the cognitive capacity to understand the need for CPAP, difficult ethical questions arise. We present a case in which decisions had to be made for such a patient, with commentary by 2 experts in pediatric pulmonary medicine. Dennis Rosen is an Instructor in Medicine at the Harvard Medical School and Associate Medial Director of the Sleep Laboratory at Children's Hospital Boston. Ben Wilfond is a pediatric pulmonologist and Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital. J.R., a 17-year-old girl with profound cognitive impairment secondary to hypoxic encephalopathy in infancy, was referred to the pediatric sleep clinic because of snoring, choking, and witnessed apnea during sleep. She had undergone adenotonsillectomy (AT) 4 years earlier because of similar symptoms and had improved. However, in the 2 years preceding her clinic visit, her symptoms had reappeared and gotten progressively worse. On examination, she was microcephalic, she had a short neck, her BMI was 46.6, and she was uncooperative and combative during the exam. J.R. is nonverbal and gets the attention of family members by grunting toward objects of interest. She has had spastic quadriparesis since birth and moves around the house on her knees when out of her wheelchair. Behaviorally, she often has temper tantrums that consist of furious spells of kicking and head banging. She has frequent minor injuries from these tantrums. She is on risperidone and fluoxetine to “calm her.” She eats by mouth, with occasional episodes of choking. She has never had aspiration … Address correspondence to John D. Lantos, MD, Children’s Mercy Bioethics Center, Children’s Mercy Hospital, 2401 Gillham Road, Kansas City, MO 64108. E-mail: jlantos{at}cmh.edu