Abstract
What should doctors do when they are caring for a dying child with a complex, chronic condition and whose parents will not agree to palliative care? What if those parents are cognitively delayed and have lost legal custody of the child because of their inability to care for her? This month's Ethics Rounds concerns a child with septo-optic dysplasia and respiratory failure. She is cared for by her grandmother and is legally a ward of the state. The doctors think that a do-not-resuscitate order is appropriate. Her grandmother agrees and is even ready to withdraw ventilator support. Her parents disagree. We asked 2 experts in bioethics consultation and palliative care to comment on this case. Joel Frader is Chief of General Academic Pediatrics and Medical Co-Director of Pediatric Palliative Care at Children's Memorial Hospital in Chicago, Illinois. Eric Kodish is Chair of the Department of Bioethics at the Cleveland Clinic in Cleveland, Ohio. D. K. is a 2-year-old girl with septo-optic dysplasia, microcephaly, seizure disorder, and severe developmental delay who is intubated for respiratory syncytial virus with respiratory failure. Her past medical history is significant for microcephaly and severe developmental delay since birth. Her baseline functioning is minimal — she has no purposeful movement and no speech or comprehension of language. She is unable to swallow and is given nutrition through a gastrostomy tube. Both of her parents are developmentally delayed and were unable to care for her at home. The state placed her with the maternal grandmother. Although the mother and father no longer have custody, they have been in the PICU and at the bedside daily since the patient was admitted to the hospital. The patient was admitted in respiratory failure and intubated. On the second hospital day, she suffered an acute respiratory decompensation on the ventilator and … 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
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