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Pediatrics. 2019 Dec;144(6). pii: e20191130. doi: 10.1542/peds.2019-1130. Epub 2019 Nov 5.

When Specialty Care Is Unavailable to Rural Families.

Author information

Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, Ohio.
Children's Hospital at Dartmouth-Hitchcock, Lebanon, New Hampshire.
Department of Pediatrics, Geisel School of Medicine, Dartmouth College, Hanover, New Hampshire.
The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire.
Gnaegi Center for Health Care Ethics, Saint Louis University, St Louis, Missouri.
Cardinal Glennon Children's Hospital, St Louis, Missouri; and.
Children's Mercy Kansas City and School of Medicine, University of Missouri-Kansas City, Kansas City, Missouri


We present the case of a 2-year-old boy with epidermolysis bullosa and supraglottic stenosis whose parents refuse an elective tracheostomy because of the significant care the tracheostomy would require. The patient's family lives in a rural area with few health care resources and his parents are already handling hours of daily skin care for his epidermolysis bullosa. In an attempt to convince the parents to pursue the intervention, the medical team recommends that the family move to an area with additional resources to assist in the child's care. The parents refuse to move, citing the many benefits their home environment provides for their son. The medical team calls an ethics consultation, questioning whether this decision constitutes medical neglect. This case raises important questions about medical decision-making in pediatrics. First, is a parent's refusal of a recommended medical intervention because it would require moving their family to a new environment a reasonable decision? Second, how broadly can parents define their child's best interest? Should only physical interests be included when making medical decisions? Is there a limit to what can be considered a relevant interest? Third, can parents only consider the interests of the individual child, or can they consider the interests of other members of the family? Finally, what is the threshold for overruling a parental decision? Is it whenever the parent's definition of a patient's best interest is different from the medical team's, or do other criteria have to be met?


Conflict of interest statement

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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