英國(guó)絕癥患兒查理?加德引全球熱議

近日，英國(guó)絕癥患兒查理•加德引起了包括美國(guó)總統(tǒng)特朗普與教皇方濟(jì)各在內(nèi)的多方關(guān)注。11個(gè)月大的查理•加德患有無(wú)法治愈的基因疾病，父母希望帶他前往美國(guó)接受“實(shí)驗(yàn)性”治療。但醫(yī)院專(zhuān)家認(rèn)為這只會(huì)令他更痛苦，并決定拔掉查理的呼吸機(jī)。

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(yī)生表示，11個(gè)月大的查理•加德因患有無(wú)法治愈的腦損傷，失去了視力和聽(tīng)力，無(wú)法活動(dòng)，甚至不會(huì)哭。這名身患絕癥的英國(guó)寶寶的生死引發(fā)了全球關(guān)于倫理問(wèn)題的爭(zhēng)論，并引起了教皇方濟(jì)各和美國(guó)總統(tǒng)特朗普的關(guān)注。

醫(yī)院為何主張結(jié)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(jiàn)的退行性疾病，也就是線(xiàn)粒體DNA缺失綜合征。英國(guó)的主治醫(yī)生主張撤掉查理的呼吸機(jī)，并稱(chēng)查理沒(méi)有呼吸機(jī)就無(wú)法存活，他有權(quán)體面地離開(kāi)人世。而小查理的父母克里斯•加德和康妮•伊茨卻希望醫(yī)院把小查理送還他們，他們會(huì)帶孩子到美國(guó)進(jìn)行實(shí)驗(yàn)性治療。

查理是世界上僅有的16個(gè)患有線(xiàn)粒體缺失綜合征的患者之一，這種病癥會(huì)引起漸進(jìn)性的肌肉無(wú)力和大腦損傷?，F(xiàn)在查理已經(jīng)受到了不可逆轉(zhuǎn)的腦損傷，不能自主呼吸，失去了視力和聽(tīng)力，無(wú)法移動(dòng)、哭泣或者吞咽。目前醫(yī)學(xué)上沒(méi)有任何辦法進(jìn)行有效治療。8個(gè)月來(lái)，查理一直在醫(yī)院的重癥監(jiān)護(hù)室里接受治療，在呼吸機(jī)的幫助下維持生命。

患兒生命應(yīng)由誰(shuí)做主?

查理一家的遭遇重新喚起了關(guān)于患兒生命應(yīng)由誰(shuí)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(shù)十年間，世界各地關(guān)于安樂(lè)死和呼吸機(jī)的爭(zhēng)論聲就一直沒(méi)有停止過(guò)，還時(shí)常伴隨著關(guān)于醫(yī)療和宗教問(wèn)題的討論。如今，這項(xiàng)爭(zhēng)議再次引發(fā)關(guān)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(dǎo)致了此案飽受爭(zhēng)議。英國(guó)醫(yī)學(xué)會(huì)表示，英國(guó)法律規(guī)定父母有權(quán)同意孩子進(jìn)行藥物治療。然而父母的權(quán)利不是絕對(duì)的，若醫(yī)生和父母意見(jiàn)存在分歧，法院可以依據(jù)患兒的利益來(lái)做出客觀的裁決。

根據(jù)英國(guó)法律，如果父母和醫(yī)生對(duì)孩子的治療意見(jiàn)有分歧，法庭可以出面干涉，以保護(hù)患兒的權(quán)益。例如，有時(shí)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.

位于法國(guó)的歐洲人權(quán)法院判定加德和伊茨敗訴，并在6月27日裁決允許醫(yī)院撤掉查理的呼吸機(jī)。此前，英國(guó)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(yī)院給了查理的父母更多的時(shí)間與孩子道別，因此呼吸機(jī)被撤時(shí)間尚未確定。

查理的父母指責(zé)醫(yī)院不讓他們將身患絕癥的寶寶帶回家，讓他在家里度過(guò)最后的時(shí)光。

“我們想讓小查理回家。”加德的父親說(shuō)：“我們想在家給他洗澡，讓他舒服地躺在沙發(fā)上，想把他放在他從沒(méi)睡過(guò)的小床上，但是他們卻不同意我們最后的請(qǐng)求。”

特朗普和教皇表達(dá)聲援

英國(guó)最高法院的判決在民間也曾掀起軒然大波，有超過(guò)11萬(wàn)人簽名請(qǐng)?jiān)福?qǐng)求首相能夠出面幫助解決這個(gè)問(wèn)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(guó)首相特蕾莎•梅周三對(duì)查理的父母表示同情，并表示她理解他們?cè)敢鉃榫群⒆痈F盡一切的舉動(dòng)。但同時(shí)，她也贊同醫(yī)院的做法，稱(chēng)醫(yī)院會(huì)考慮一切對(duì)查理有利的有關(guān)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(shuō)道：“被迫做出如此令人痛心的決定——我知道沒(méi)有哪位醫(yī)生愿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(fā)了美國(guó)總統(tǒng)特朗普的關(guān)注，他在周一代表美國(guó)向查理表達(dá)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(fā)文說(shuō)：“如果我們能夠像英國(guó)的朋友和教皇一樣幫助查理•加德，我們?cè)敢膺@樣做。”

查理的媽媽伊茨給特朗普的推特回復(fù)說(shuō)，“兒子都沒(méi)放棄，我們?cè)趺茨芊艞?”

就在特朗普提出幫助的幾個(gè)小時(shí)之前，教皇方濟(jì)各說(shuō)，查理的父母應(yīng)該被允許陪伴和治療孩子直到最后。教皇方濟(jì)各發(fā)出推特消息說(shuō)：“捍衛(wèi)人的生命權(quán)是上帝賦予所有人的愛(ài)的責(zé)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(rèn)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(shuō)：“總統(tǒng)和教皇的支持給了我們希望。他們都是對(duì)家庭有信仰的人，他們對(duì)查理有信心并且理解為什么我們?yōu)榱送炀炔槔淼纳D苦戰(zhàn)斗。”

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.

雖然特朗普并未說(shuō)明美國(guó)會(huì)如何幫助查理，但一位美國(guó)醫(yī)生表示同意對(duì)查理進(jìn)行一項(xiàng)名為核苷分流治療的實(shí)驗(yàn)性治療。

查理的父母目前已經(jīng)籌集到130萬(wàn)英鎊的善款，可以用于查理前往美國(guó)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(dòng)中查理的父母解釋道，核苷分流治療原理是通過(guò)口服藥物來(lái)補(bǔ)充查理的身體無(wú)法產(chǎn)生的天然化合物。他們希望這些藥物可以修復(fù)查理線(xiàn)粒體基因缺陷。查理所患的線(xiàn)粒體DNA缺失綜合征預(yù)后不良，會(huì)引起肌肉無(wú)力、器官功能障礙和其他并發(fā)癥。

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(shí)用倫理學(xué)中心生命倫理學(xué)家朱利安•薩烏雷斯古稱(chēng)，此種療法改善病情的幾率微乎其微，且從未用于查理這種癥狀的治療。雖然對(duì)好幾個(gè)患有線(xiàn)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(lèi)似案件受到世界關(guān)注。當(dāng)時(shí)，5歲的英國(guó)男孩Ashya King身患癌癥，父母不顧醫(yī)生的建議，將他從醫(yī)院帶離，尋求英國(guó)沒(méi)有的一種療法——質(zhì)子射線(xiàn)療法。這對(duì)夫婦曾因此在西班牙被捕，但最終獲準(zhǔn)帶兒子去捷克治療。小孩現(xiàn)在已經(jīng)痊愈回到學(xué)校，英國(guó)也正在建設(shè)3個(gè)質(zhì)子射線(xiàn)療法中心。

最新進(jìn)展

A US hospital has offered to ship an experimental drug to the UK to help treat critically ill Charlie Gard.

美國(guó)一家醫(yī)院將把一種實(shí)驗(yàn)性藥物寄送到英國(guó)，幫助治療生命垂危的小查理。

New York Presbyterian hospital and Columbia University Irving medical center also offered to admit the 11-month-old if legal hurdles could be cleared.

紐約長(zhǎng)老教會(huì)醫(yī)院和哥倫比亞大學(xué)歐文醫(yī)療中心還答應(yīng)說(shuō)，如果不再有法律障礙，將接收小查理前來(lái)治療。