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“Without doubt, decision making is difficult in cases involving birth defective newborns.”

“Without doubt, decision making is difficult in cases involving birth defective newborns.” Robert Weir: Selective nontreatment of handicapped newborns: moral dilemmas in neonatal medicine. 1984. 放棄治療 Trisomy 18, Trisomy 13, Anencephaly, 早產兒併腦出血 (Grade 4 以上 ) 拒絕治療 唐氏症 脊柱裂 (spina bifida)

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“Without doubt, decision making is difficult in cases involving birth defective newborns.”

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  1. “Without doubt, decision making is difficult in cases involving birth defective newborns.” Robert Weir: Selective nontreatment of handicapped newborns: moral dilemmas in neonatal medicine. 1984. 放棄治療 Trisomy 18, Trisomy 13, Anencephaly, 早產兒併腦出血 (Grade 4以上) 拒絕治療 唐氏症 脊柱裂 (spina bifida) 氣管食管廔管 極度低出生體重 (~500 gm)?

  2. 希伯克拉底氏誓言 THE OATH (Hippocrates, 400BC) I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous. 我必優先考慮病人的利益，禁絕任何 對病人有害的。

  3. 醫師誓言 1. 我願意貢獻我的一生為救人濟世而努力 2. 我願意尊敬和感謝我老師 3.我願意盡我一切的力量尊重生命，妥善加以維護，並以獨立 自由良知與尊嚴之態度執行我的救人聖職 4. 我願意時常追求醫學知進步與社會常識知素養而努力，使我 的學識不陷入偏僻之弊 5. 我願意最先考慮病人之利益，不允許任何對病人不利的事情 干預我的職務 6. 我願意不違背病人知信託，不洩漏病人之祕密 7. 我願意不接受任何在醫療上不當之報酬，不接受任何以營利 為目的之職務 8. 我願意不做不能勝任之醫療行為，不爭奪病人就醫，不避忌 共同會診，使病人有選擇醫師之自由權 9. 我願意對同仁有禮貌，互敬互信，協力維護醫師之社會地位

  4. 醫師法(民國91年01月16日修正) 第四章懲處 第25條 醫師有下列情事之一者，由醫師公會或主管機關移付懲戒： 一 業務上重大或重複發生過失行為。 二 利用業務機會之犯罪行為，經判刑確定。 三 非屬醫療必要之過度用藥或治療行為。 四 執行業務違背醫學倫理。 五 前四款及第二十八條之四各款以外之業務上不正當行為。

  5. 兒童福利法1.中華民國六十二年二月八日總統公布全文30條2.中華民國九十一年六月二十六日總統修正公布第一章 總則 第2條本法所稱兒童，指未滿十二歲之人。第5條兒童之權益受到不法侵害時，政府應予適當之協助與保護。第二章 福利設施 第13條 七.對於棄嬰及無依兒童，予以適當之安置。

  6. 第15條兒童有左列各款情形之一，非立即給予緊急保護、安置或為其他處分，其生命、身體或自由有明顯而立即之危險者，應予緊急保護、安置或為其他必要之處分：一 兒童未受適當之養育或照顧。二兒童有立即接受診治之必要，但未就醫者。三 兒童遭遺棄、虐待、押賣，被強迫或引誘從事不正當之行為或工作者。主管機關緊急安置兒童遭遇困難時，得請求檢察官或警方協助之。安置期間，主管機關或受主管機關委任安置之機構在保護安置兒童之範圍內，代行原親權人或監護人之親權或監護權。

  7. 第18條 醫師、護士、社會工作員、臨床心理工作者、教育 人員、保育人員、警察、司法人員及其他執行兒童 福利業務人員，知悉兒童有第十五條第一項(兒童 未受適當之養育或照顧)及第二十六條各款情形或 遭受其他傷害情事者，應於二十四小時內向當地主 管機關報告。 前項報告人之身分資料應予保密。

  8. 第四章 保護措施第26條任何人對於兒童不得有左列行為︰第四章 保護措施第26條任何人對於兒童不得有左列行為︰ 一 遺棄。 二 身心虐待。 三 利用兒童從事危害健康、危害性活動或欺騙之行為。 四 利用身心障礙或畸形兒童供人參觀。 五 利用兒童行乞。 六 供應兒童觀看閱讀聽聞或使用有礙身心之電影片、錄影節目帶、 照片、出版品、器物或設施。 七 剝奪或妨礙兒童接受國民教育之機會或非法移送兒童至國外就學。 八 強迫兒童婚嫁。 九 拐騙、綁架、買賣、質押兒童，或以兒童為擔保之行為。 一○ 強迫、引誘、容留、容認或媒介兒童為猥褻行為或性交。 一一 供應兒童毒藥、毒品、管制藥品、刀械、槍砲、彈藥或其他危險 物品。 一二 利用兒童攝製猥褻或暴力之影片、圖片。 一三 帶領或誘使兒童進入有礙其身心健康之場所。 一四 其他對兒童或利用兒童犯罪或為不正當之行為。

  9. 第五章 罰則 第48條父母、養父母、監護人或其他實際照顧兒童 之人，違反第二十六條、第三十條、第三十一條第 一項、第三十三條第一項、第二項或第三十四條， 情節嚴重，或有第十五條第一項所列各種情事者， 主管機關應令其接受四小時以上之親職教育輔導。 不接受第一項親職教育輔導或時數不足者，處新幣一千 二百元以上六千元以下罰鍰，經再通知仍不接受者，得 按次處罰，至其參加為止。 第49條 違反第十八條規定者，處新台幣六千元以上三 萬元以下罰鍰。

  10. Baby Doe Regulations 1982, April, Baby Doe - Down’s syndrome and esophageal atresia with T-E fistula. Parents refused consent for the surgical repair. Physicians requested a court order to perform the corrective surgery. The Indiana state courts upheld the parents’ decision and infant died. Department of Health and Human Services issued a notice to hospitals that nontreatment of seriously ill newborns constitutes discrimination on the basis of handicap. Section 504 of the Rehabilitation Act of 1973: No otherwise qualified handicapped individual in the United States..., solely by reason of his handicap, be excluded from participation in, or be denied the benefits of, or be subjected to discrimination under any program of activity receiving Federal financial assistance.

  11. 1983, October, Baby Jane Doe - spina bifida, meningomyelocele, hydrocephalus and microcephaly. Parents chose to forgo surgery and maintain antibiotic therapy. The New York Supreme Court concluded that surgery was necessary and ordered it to be performed. The Court of Appeals reversed, determining that the parents were acting in the best interests of the child.

  12. Nondiscrimination on the Basis of Handicaps: Procedures & Guidelines Relating to Health Care for Handicapped Infants 1. All such disabled infants must under all circumstances receive appropriate nutrition, hydration and medication. 2. All such disabled infants must be given medically indicated treatment. 3. There are three exceptions to the requirement that all disabled infants must receive treatment, in which treatment is not considered “medically indicated.” a. If the infant is chronically and irreversibly comatose. b. If the treatment wouldmerely prolong dying, not be effective in ameliorating or correcting all of the infant’s life-threatening conditions. c. If the treatment would be virtually futile and the treatment itselfwould be inhumane. 4. The physician’s “reasonable medical judgment” concerning the medically indicated treatment must be one that would be made by a reasonably prudent physician, knowledgeable about the case and the treatment possibilities with respect to the medical conditions involved. It is not to be based on subjective “quality of life” or other abstract concepts.

  13. Best Interests of the Infant 決定維持生命的治療，應該考慮如何是最有利於嬰兒的 因素： 1) 治療成功的機會， 2) 治療和不治療的危險， 3) 治療將延長生命的程度， 4) 治療帶來的痛苦和不安， 5) 治療和不治療對其生活品質的影響。

  14. 生活品質的考慮 • 1.必須從嬰兒的角度評估。 • 2.不要評斷病人的社會價值或對他人的益處，例如父母。 • 3.生命的意義： • 例如處理人際關係、遂行個人意志、與環境進行有意義 • 互動的能力，給予和感受愛。 • 誰應該或可以做決定

  15. The management of severely malformed newborn infants: the case of conjoined twins B.M. Dickens, R.J. Cook Faculty of Law, Faculty of Medicine and Joint Center for Bioethics, University of Toronto, Toronto, Canada Abstract The birth of ‘Siamese’ twins in August 2000 whose parents refused to consent to surgery for separation required English courts to decide whether the twins could lawfully be separated despite that refusal when one twin would certainly die as a direct surgical result. The Court of Appeal unanimously upheld the trial judge’s decision to authorize surgery, taking account of principles of family law, criminal law and human rights law. Parental duties to the viable twin were found consistent with the justification of allowing, without intending, natural death of the non-viable twin. The right to human dignity of both twins supported the justification of separation surgery. The decision did not elevate physicians’ choices over parents’, but subjected both to the law. The hospital was found entitled to bring the case to court, but not obliged; it could have declined surgery in conformity with the parents’ wishes. (Int J Gynecol Obstet 2001;73:69-75)

  16. 2004;351:2118-2123 COVER STORY: October 22, 1999Premature Babies, 23 wks, 615 gm,severe mental retardation, cerebral palsy, seizures, and spastic quadriparesis

  17. 1.決定維持生命的治療，應考慮最有利於嬰兒的因素：1.決定維持生命的治療，應考慮最有利於嬰兒的因素： 1)治療成功的機會，2)治療和不治療的危險， 3)治療將延長生命的程度，4)治療帶來的痛苦和不安， 5)治療和不治療對其生活品質的影響。 2.醫師必須提供資訊給父母，包括治療性質、治療選項、 有和沒有治療的預後，讓父母能做明智的決定。 3.倫理委員會： 幫助父母做決定， 幫助調停父母，醫師和其它關係人中出現的衝突， 當父母的決定不能合理被判斷為嬰兒的最好利益時。應 該轉介到適當的公家機構。

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