{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,5]],"date-time":"2025-11-05T06:39:47Z","timestamp":1762324787552,"version":"3.40.5"},"reference-count":11,"publisher":"American Academy of Pediatrics (AAP)","issue":"Supplement_1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,8,1]]},"abstract":"<jats:p>In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient\u2019s suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child\u2019s suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term \u201csuffering,\u201d and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the \u201csuffering child\u201d continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child.<\/jats:p>","DOI":"10.1542\/peds.2020-0818m","type":"journal-article","created":{"date-parts":[[2020,7,31]],"date-time":"2020-07-31T13:25:13Z","timestamp":1596201913000},"page":"S66-S69","source":"Crossref","is-referenced-by-count":5,"title":["The Suffering Child: Claims of Suffering in Seminal Cases and What To Do About Them"],"prefix":"10.1542","volume":"146","author":[{"given":"Annie B.","family":"Friedrich","sequence":"first","affiliation":[{"name":"Albert Gnaegi Center for Health Care Ethics, Saint Louis University, St Louis, Missouri"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"417","published-online":{"date-parts":[[2020,8,1]]},"reference":[{"issue":"2","key":"2021121011393739000_B1","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1007\/s13311-013-0177-6","article-title":"Mitochondrial DNA depletion syndromes: review and updates of genetic basis, manifestations, and therapeutic options","volume":"10","author":"El-Hattab","year":"2013","journal-title":"Neurotherapeutics"},{"key":"2021121011393739000_B2","unstructured":"Great Ormond Street Hospital v Yates & Others, [2017] EWHC 972 (Fam). Available at: www.bailii.org\/ew\/cases\/EWHC\/Fam\/2017\/972.html. Accessed September 25, 2019"},{"key":"2021121011393739000_B3","unstructured":"Bilefsky\u2008D. Charlie Gard dies, leaving a legacy of thorny ethics questions. The New York Times. 2017. Available at: https:\/\/www.nytimes.com\/2017\/07\/28\/world\/europe\/charlie-gard-dead.html. Accessed September 25, 2019"},{"key":"2021121011393739000_B4","unstructured":"Alder Hey Children\u2019s NHS Foundation Trust v Evans. [2018] EWHC 308 (Fam). Available at: https:\/\/www.judiciary.uk\/wp-content\/uploads\/2018\/02\/alder-hey-v-evans.pdf. Accessed September 25, 2019"},{"key":"2021121011393739000_B5","unstructured":"Wright\u2008D. Terminally-ill British boy Alfie Evans becomes rallying point for US conservatives. ABC News. April 26, 2018. Available at: https:\/\/abcnews.go.com\/International\/terminally-ill-british-boy-alfie-evans-rallying-point\/story?id=54752587. Accessed September 25, 2019"},{"key":"2021121011393739000_B6","unstructured":"Coleman\u2008GD; Catholic Health Association of the United States. Reflections on the case of Baby Joseph. 2011. Available at: https:\/\/www.chausa.org\/docs\/default-source\/general-files\/reflections-on-the-case-of-baby-joseph-t.pdf?sfvrsn=4. Accessed October 23, 2019"},{"issue":"2","key":"2021121011393739000_B7","article-title":"The use of suffering in pediatric bioethics and clinical literature: a qualitative content analysis","volume":"32","author":"Friedrich","year":"2019","journal-title":"Pediatric Ethicscope"},{"issue":"1","key":"2021121011393739000_B8","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1177\/0969733019840745","article-title":"The new futility? The rhetoric and role of \u201csuffering\u201d in pediatric decision-making","volume":"27","author":"Salter","year":"2020","journal-title":"Nurs Ethics"},{"issue":"10","key":"2021121011393739000_B9","doi-asserted-by":"crossref","first-page":"895","DOI":"10.1001\/archpediatrics.2009.166","article-title":"End-of-life decisions in Dutch neonatal intensive care units","volume":"163","author":"Verhagen","year":"2009","journal-title":"Arch Pediatr Adolesc Med"},{"issue":"11","key":"2021121011393739000_B10","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1080\/15265160802513150","article-title":"We cannot accurately predict the extent of an infant\u2019s future suffering: the Groningen Protocol is too dangerous to support","volume":"8","author":"Kon","year":"2008","journal-title":"Am J Bioeth"},{"key":"2021121011393739000_B11","doi-asserted-by":"crossref","first-page":"S44","DOI":"10.1542\/peds.2013-3608H","article-title":"Tracheostomies and assisted ventilation in children with profound disabilities: navigating family and professional values","volume":"133","author":"Wilfond","year":"2014","journal-title":"Pediatrics"}],"container-title":["Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/146\/Supplement_1\/S66\/913549\/peds_20200818m.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/146\/Supplement_1\/S66\/913549\/peds_20200818m.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,12,11]],"date-time":"2021-12-11T00:22:39Z","timestamp":1639182159000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.aap.org\/pediatrics\/article\/146\/Supplement_1\/S66\/34483\/The-Suffering-Child-Claims-of-Suffering-in-Seminal"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,8,1]]},"references-count":11,"journal-issue":{"issue":"Supplement_1","published-online":{"date-parts":[[2020,8,1]]},"published-print":{"date-parts":[[2020,8,1]]}},"URL":"https:\/\/doi.org\/10.1542\/peds.2020-0818m","relation":{},"ISSN":["0031-4005","1098-4275"],"issn-type":[{"type":"print","value":"0031-4005"},{"type":"electronic","value":"1098-4275"}],"subject":[],"published":{"date-parts":[[2020,8,1]]}}}