英國絕症患兒查理•加德引全球熱議

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近日，英國絕症患兒查理•加德引起了包括美國總統特朗普與教皇方濟各在內的多方關注。11個月大的查理•加德患有無法治癒的基因疾病，父母希望帶他前往美國接受“實驗性”治療。但醫院專家認爲這隻會令他更痛苦，並決定拔掉查理的呼吸機。

Eleven-month-old Charlie Gard has irreversible brain damage and cannot see, hear, move or even cry, doctors say. Yet this terminally ill British baby is at the middle of a global ethical argument over whether he should live or die, an argument that has attracted the attention of Pope Francis and US President Donald Trump.
醫生表示，11個月大的查理•加德因患有無法治癒的腦損傷，失去了視力和聽力，無法活動，甚至不會哭。這名身患絕症的英國寶寶的生死引發了全球關於倫理問題的爭論，並引起了教皇方濟各和美國總統特朗普的關注。

醫院爲何主張結束他的生命？

Charlie has an extremely rare degenerative condition called mitochondrial DNA depletion syndrome. His doctors in Britain want to take him off life support, arguing that he has no hope of surviving without assistance and that he should be allowed to die in dignity. But Charlie's parents, Chris Gard and Connie Yates, want the hospital to release their baby into their custody so they can take him to the United States for an experimental treatment.
小查理患有罕見的退行性疾病，也就是線粒體DNA缺失綜合徵。英國的主治醫生主張撤掉查理的呼吸機，並稱查理沒有呼吸機就無法存活，他有權體面地離開人世。而小查理的父母克里斯•加德和康妮•伊茨卻希望醫院把小查理送還他們，他們會帶孩子到美國進行實驗性治療。

查理是世界上僅有的16個患有線粒體缺失綜合徵的患者之一，這種病症會引起漸進性的肌肉無力和大腦損傷。現在查理已經受到了不可逆轉的腦損傷，不能自主呼吸，失去了視力和聽力，無法移動、哭泣或者吞嚥。目前醫學上沒有任何辦法進行有效治療。8個月來，查理一直在醫院的重症監護室裏接受治療，在呼吸機的幫助下維持生命。

患兒生命應由誰做主？

查理一家的遭遇重新喚起了關於患兒生命應由誰做主的討論。

The case has resurfaced a decades-old debate over euthanasia and the use of life support, issues that have been fought in most corners of the world and that have often seen medical and religious arguments collide.
數十年間，世界各地關於安樂死和呼吸機的爭論聲就一直沒有停止過，還時常伴隨着關於醫療和宗教問題的討論。如今，這項爭議再次引發關注。

There is some legal uncertainty, too: Under British law, parental responsibility includes the right to give consent for medical treatment, according to the British Medical Association. However, parental rights are not absolute, and in cases in which doctors and parents disagree, the courts may exercise objective judgment in a child's best interest.
法律上的不確定性也導致了此案飽受爭議。英國醫學會表示，英國法律規定父母有權同意孩子進行藥物治療。然而父母的權利不是絕對的，若醫生和父母意見存在分歧，法院可以依據患兒的利益來做出客觀的裁決。

根據英國法律，如果父母和醫生對孩子的治療意見有分歧，法庭可以出面干涉，以保護患兒的權益。例如，有時父母的宗教信仰不允許孩子接受輸血。

Gard and Yates lost their appeal to the European Court of Human Rights in France, which ruled June 27 that the hospital could discontinue Charlie's life support. They had already lost an appeal to the UK Supreme Court.
位於法國的歐洲人權法院判定加德和伊茨敗訴，並在6月27日裁決允許醫院撤掉查理的呼吸機。此前，英國最高法院也駁回了他們的上訴。

Now, the date Charlie's life support will be switched off appears to be up in the air, as the hospital is allowing the parents to spend more time with their child.
目前，醫院給了查理的父母更多的時間與孩子道別，因此呼吸機被撤時間尚未確定。

查理的父母指責醫院不讓他們將身患絕症的寶寶帶回家，讓他在家裏度過最後的時光。

“我們想讓小查理回家。”加德的父親說：“我們想在家給他洗澡，讓他舒服地躺在沙發上，想把他放在他從沒睡過的小牀上，但是他們卻不同意我們最後的請求。”

特朗普和教皇表達聲援

英國最高法院的判決在民間也曾掀起軒然大波，有超過11萬人簽名請願，請求首相能夠出面幫助解決這個問題。

On Wednesday, British Prime Minister Theresa May expressed her sympathy for the baby's parents, saying she understood why they would want to explore all options for their child. But she also defended the hospital, saying that it would consider any offers on new information that would benefit the baby.
英國首相特蕾莎•梅週三對查理的父母表示同情，並表示她理解他們願意爲救孩子窮盡一切的舉動。但同時，她也贊同醫院的做法，稱醫院會考慮一切對查理有利的有關最新消息的提議。

"I also know that no doctor wants to be placed in the terrible position where they have to make such heartbreaking decisions," she said.
她說道：“被迫做出如此令人痛心的決定——我知道沒有哪位醫生願意面臨這樣可怕的境地。”

The case of Charlie Gard has also captured the attention of US President Trump, who on Monday offered US support for the baby.
查理一案同樣引發了美國總統特朗普的關注，他在週一代表美國向查理表達了支持。

"If we can help little #CharlieGard, as per our friends in the UK and the Pope, we would be delighted to do so," he wrote on Twitter.
特朗普在推特上發文說：“如果我們能夠像英國的朋友和教皇一樣幫助查理•加德，我們願意這樣做。”

查理的媽媽伊茨給特朗普的推特回覆說，“兒子都沒放棄，我們怎麼能放棄！”

就在特朗普提出幫助的幾個小時之前，教皇方濟各說，查理的父母應該被允許陪伴和治療孩子直到最後。教皇方濟各發出推特消息說：“捍衛人的生命權是上帝賦予所有人的愛的責任。”

Yates said in a statement that she was taking support from Trump and the Pope seriously.
伊茨在聲明中表示她在認真考慮特朗普和教皇提出的幫助。

"The support from the Pope and the President has given us hope. They are traditional men who believe in the family. They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie," she said.
她說：“總統和教皇的支持給了我們希望。他們都是對家庭有信仰的人，他們對查理有信心並且理解爲什麼我們爲了挽救查理的生命而艱苦戰鬥。”

新治療手段能否挽救查理生命？

Trump did not elaborate on how the US might help the child, but a US doctor has agreed to carry out an experimental treatment called nucleoside bypass therapy.
雖然特朗普並未說明美國會如何幫助查理，但一位美國醫生表示同意對查理進行一項名爲核苷分流治療的實驗性治療。

查理的父母目前已經籌集到130萬英鎊的善款，可以用於查理前往美國的治療。

As the parents explained in their fundraising efforts, the therapy is an oral medication that provides Charlie with naturally occurring compounds that his body is not able to produce. His parents hope that the medicine might repair his flawed mitochondrial genes. Mitochondrial DNA depletion has a poor prognosis and leads to weakened muscles and organ dysfunction, among other symptoms.
在募款活動中查理的父母解釋道，核苷分流治療原理是通過口服藥物來補充查理的身體無法產生的天然化合物。他們希望這些藥物可以修復查理線粒體基因缺陷。查理所患的線粒體DNA缺失綜合徵預後不良，會引起肌肉無力、器官功能障礙和其他併發症。

According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement. It has never been used to treat this form of mitochondrial DNA depletion syndrome, though it has proved beneficial to patients with a different form of the disease.
牛津上廣實用倫理學中心生命倫理學家朱利安•薩烏雷斯古稱，此種療法改善病情的機率微乎其微，且從未用於查理這種症狀的治療。雖然對好幾個患有線粒體缺陷的病人有作用，但是病情與查理的不一樣。

2014年，也曾有類似案件受到世界關注。當時，5歲的英國男孩Ashya King身患癌症，父母不顧醫生的建議，將他從醫院帶離，尋求英國沒有的一種療法——質子射線療法。這對夫婦曾因此在西班牙被捕，但最終獲准帶兒子去捷克治療。小孩現在已經痊癒回到學校，英國也正在建設3個質子射線療法中心。