{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,29]],"date-time":"2025-10-29T19:37:18Z","timestamp":1761766638706,"version":"3.41.2"},"reference-count":14,"publisher":"American Academy of Pediatrics (AAP)","issue":"6","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2019,12,1]]},"abstract":"<jats:p>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\u2019s 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\u2019s 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\u2019s 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\u2019s 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\u2019s definition of a patient\u2019s best interest is different from the medical team\u2019s, or do other criteria have to be met?<\/jats:p>","DOI":"10.1542\/peds.2019-1130","type":"journal-article","created":{"date-parts":[[2019,11,5]],"date-time":"2019-11-05T13:25:46Z","timestamp":1572960346000},"source":"Crossref","is-referenced-by-count":3,"title":["When Specialty Care Is Unavailable to Rural Families"],"prefix":"10.1542","volume":"144","author":[{"given":"Jennifer E.","family":"deSante-Bertkau","sequence":"first","affiliation":[{"name":"Cincinnati Children\u2019s Hospital Medical Center, Cincinnati, Ohio;"},{"name":"Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, Ohio;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine D.","family":"Shubkin","sequence":"additional","affiliation":[{"name":"Children\u2019s Hospital at Dartmouth-Hitchcock, Lebanon, New Hampshire;"},{"name":"Department of Pediatrics, Geisel School of Medicine, Dartmouth College, Hanover, New Hampshire;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William A.","family":"Nelson","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Geisel School of Medicine, Dartmouth College, Hanover, New Hampshire;"},{"name":"The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erica K.","family":"Salter","sequence":"additional","affiliation":[{"name":"Gnaegi Center for Health Care Ethics, Saint Louis University, St Louis, Missouri;"},{"name":"Cardinal Glennon Children\u2019s Hospital, St Louis, Missouri; and"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John D.","family":"Lantos","sequence":"additional","affiliation":[{"name":"Children\u2019s Mercy Kansas City and School of Medicine, University of Missouri\u2013Kansas City, Kansas City, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"417","published-online":{"date-parts":[[2019,12,1]]},"reference":[{"issue":"3","key":"2021121103253894700_B1","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1093\/jmp\/22.3.271","article-title":"The best-interests standard as threshold, ideal, and standard of reasonableness","volume":"22","author":"Kopelman","year":"1997","journal-title":"J Med Philos"},{"issue":"2","key":"2021121103253894700_B2","doi-asserted-by":"crossref","first-page":"175","DOI":"10.1086\/JCE200920212","article-title":"What really is in a child\u2019 s best interest? Toward a more precise picture of the interests of children","volume":"20","author":"Malek","year":"2009","journal-title":"J Clin Ethics"},{"issue":"2","key":"2021121103253894700_B3","doi-asserted-by":"crossref","first-page":"279","DOI":"10.1542\/peds.99.2.279","article-title":"Religious objections to medical care. American Academy of Pediatrics Committee on Bioethics","volume":"99","author":"American Academy of Pediatrics Committee on Bioethics","year":"1997","journal-title":"Pediatrics"},{"issue":"4","key":"2021121103253894700_B4","doi-asserted-by":"crossref","first-page":"243","DOI":"10.1007\/s11017-004-3146-6","article-title":"Parental refusals of medical treatment: the harm principle as threshold for state intervention","volume":"25","author":"Diekema","year":"2004","journal-title":"Theor Med Bioeth"},{"volume-title":"Rural Ethics Handbook","year":"2008","author":"Nelson","key":"2021121103253894700_B5"},{"volume-title":"The Cambridge Textbook of Bioethics","year":"2008","author":"Nelson","key":"2021121103253894700_B6"},{"volume-title":"Handbook for Rural Health Care Ethics: A Practical Guide for Professionals","year":"2010","author":"Nelson","key":"2021121103253894700_B7"},{"key":"2021121103253894700_B8","doi-asserted-by":"crossref","first-page":"s3","DOI":"10.1111\/jrh.12222","article-title":"Current state of child health in rural America: how context shapes children\u2019s health","volume":"34","author":"Probst","year":"2018","journal-title":"J Rural Health"},{"key":"2021121103253894700_B9","unstructured":"National Organization for Rare Disorders. Epidermolysis bullosa.\u20082013. Available at: https:\/\/rarediseases.org\/rare-diseases\/epidermolysis-bullosa\/. Accessed October 9, 2019"},{"issue":"8","key":"2021121103253894700_B10","doi-asserted-by":"crossref","first-page":"e16","DOI":"10.1164\/rccm.201602-0276ST","article-title":"An official American thoracic society clinical practice guideline: pediatric chronic home invasive ventilation","volume":"193","author":"Sterni","year":"2016","journal-title":"Am J Respir Crit Care Med"},{"key":"2021121103253894700_B11","doi-asserted-by":"crossref","first-page":"354","DOI":"10.1016\/j.jpeds.2018.07.045","article-title":"Caregiver perceptions about their decision to pursue tracheostomy for children with medical complexity","volume":"203","author":"Nageswaran","year":"2018","journal-title":"J Pediatr"},{"key":"2021121103253894700_B12","doi-asserted-by":"crossref","first-page":"S81","DOI":"10.1542\/peds.2014-1394C","article-title":"Four models of family interests","volume":"134","author":"Groll","year":"2014","journal-title":"Pediatrics"},{"issue":"3","key":"2021121103253894700_B13","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1007\/s11017-012-9219-z","article-title":"Deciding for a child: a comprehensive analysis of the best interest standard","volume":"33","author":"Salter","year":"2012","journal-title":"Theor Med Bioeth"},{"issue":"1","key":"2021121103253894700_B14","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1177\/1477750915622033","article-title":"The zone of parental discretion: An ethical tool for dealing with disagreements between parents and doctors about medical treatment for a child","volume":"11","author":"Gillam","year":"2016","journal-title":"Clinical Ethics"}],"container-title":["Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/doi\/10.1542\/peds.2019-1130\/1078818\/peds_20191130.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/doi\/10.1542\/peds.2019-1130\/1078818\/peds_20191130.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,22]],"date-time":"2023-09-22T14:04:19Z","timestamp":1695391459000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.aap.org\/pediatrics\/article\/144\/6\/e20191130\/37934\/When-Specialty-Care-Is-Unavailable-to-Rural"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,12,1]]},"references-count":14,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2019,12,1]]},"published-print":{"date-parts":[[2019,12,1]]}},"URL":"https:\/\/doi.org\/10.1542\/peds.2019-1130","relation":{},"ISSN":["0031-4005","1098-4275"],"issn-type":[{"type":"print","value":"0031-4005"},{"type":"electronic","value":"1098-4275"}],"subject":[],"published":{"date-parts":[[2019,12,1]]},"article-number":"e20191130"}}