轟動全球的查理寶寶還是走了：父母跪求治療，法院卻判「安樂死」

Photo: Featureworld / Daily Mail

當地時間7月28日(上周五)，身患罕見遺傳疾病的男嬰查理·加德(Charlie Gard)去世了，年僅11個月。這個小男孩離世的消息，不僅在英國國內受到高度重視，多家媒體予以頭版頭條報道，也引起其他主流媒體的關注，英國首相特蕾莎·梅和美國副總統彭斯也紛紛發布聲明向查理·加德表示哀悼。

《衛報》：查理·加德的父母稱他們「漂亮的小男孩」已經去世

《每日郵報》：查理·加德的父母正在悲痛中準備葬禮，孩子將與他可愛的玩具猴子一同下葬

CNN：嬰兒查理·加德在移除生命支持設備後去世

《紐約時報》：查理·加德去世，留給我們關於棘手的傳統倫理的質疑

Photo: Getty Images / Daily Mail

Theresa May issued a statement to Chris Gard and Connie Yates which said: "I am deeply saddened by the death of Charlie Gard. My thoughts and prayers are with Charlie"s parents Chris and Connie at this difficult time"

英國首相特蕾莎·梅向克里斯·加德和康妮·耶茨發表聲明稱：「我對於查理·加德的逝世感到非常痛心，在這個困難的時刻，我為查理的父母克里斯和康妮祈禱。」

美國副總統彭斯：得知查理·加德逝世的消息，感到非常悲痛。在這個困難的時刻，我和凱倫向他的父母表示哀悼，並為他們祈禱。

通過媒體報道的標題，隱約能夠看出查理的死亡並非正常死亡，而是人為地移除了生命支持設備，根據報道，他實際上也就是被「安樂死」了。

在這項「旨在減少痛苦」的操作背後，是查理的父母與法院之間近5個月的「生命訴訟」，也是小男孩的死亡備受關注的主要原因。

多家英文媒體為查理進行過專題報道，讓我們根據BBC整理的查理「被安樂死」事件全過程來看看這個令人悲傷的故事：

Who is Charlie Gard?

查理·加德是誰？

Photo: Featureworld / BBC

Charlie was born on 4 August 2016 with an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS).

查理出生於2016年8月4日，患有罕見的遺傳疾病：腦脊髓病線粒體DNA耗竭綜合征（MDDS）。

Although he appeared perfectly healthy when he was born, his health soon began to deteriorate.

在他出生時，健康狀況良好，但是很快就發生了惡化。

Great Ormond Street Hospital (GOSH) said the moment Charlie was diagnosed, his prognosis was bleak.

倫敦大奧蒙德街醫院(GOSH)稱，從查理的疾病確診的那一刻起，治癒的希望就已經很渺茫了。

Charlie has severe brain damage and cannot open his eyes or move his arms or legs. His condition also means he is unable to breathe unaided, which is why he needs to be on a ventilator.

查理的大腦嚴重受損，無法睜開眼睛，也不能移動手臂或者雙腿。這個身體狀態也表示，他無法自主呼吸，必須藉助呼吸機。

His heart, liver and kidneys are also affected, and his doctors say it is not clear if he feels pain.

他的心臟、肝臟和腎臟也受到了影響，但他的醫生表示，不清楚查理是否能夠感覺到疼痛。

Why did his parents want to go to the US?

為什麼查理的父母想去美國？

Photo: Featureworld / BBC

Charlie"s parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside bypass therapy (NBT).

查理的父母康妮·耶茨和克里斯·加德來自西倫敦Bedfont地區，他們曾希望查理赴美國接受一項實驗性治療，名為核苷搭橋療法（NBT）。

The treatment is not invasive and can be added to food.

這項治療並不是侵入性的，可以添加到食物中。

A hospital in the US agreed to offer Charlie the treatment, and Charlie"s parents had raised ￡1.3m in funds to take him there.

美國的一家醫院同意向查理提供治療，查理的父母為此已經籌集了130萬英鎊(約合人民幣1148萬)的捐款。

Why did GOSH rule out the treatment?

為什麼倫敦大奧蒙德街醫院取消了治療？

File photo: BBC

No animal or human with Charlie"s condition (RRM2B deficiency) has been treated with NBT, but the treatment has been previously offered to patients with a similar genetic disorder, TK2 deficiency.

核苷搭橋療法（NBT）沒有在與查理有類似癥狀，即RRM2B基因缺陷的動物或者人身上使用過，但是之前在患有類似遺傳疾病，TK2基因缺陷的患者身上使用過。

But TK2 affects just the muscles, whereas Charlie"s condition also affects other organs and his brain.

然而TK2基因只與肌肉相關，查理的病情還影響到其他器官和大腦。

GOSH did apply for ethical permission to attempt nucleoside therapy on Charlie.

倫敦大奧蒙德街醫院申請過在查理身上進行核苷搭橋療法的倫理許可。

However, by the time that decision was made Charlie"s condition had greatly worsened and the view was his brain damage was too severe and irreversible for the treatment to help.

然而，在做出決定的時候，查理的病情嚴重惡化，大腦損傷非常嚴重，即使加以治療，也無法逆轉了。

After contacting other experts in the condition from medical centres across the world, doctors came to the conclusion that Charlie"s life support should be switched off and he should be allowed to die with dignity.

在與世界各地醫療中心的其他專家聯繫之後，醫生得出的結論是，查理的生命支持設備應該被關閉，他應該被允許有尊嚴地死去。

What happened in the courts?

法庭上發生了什麼？

Photo: Will Oliver / EPA / nytimes

Charlie"s parents disagreed with the hospital and did not want his life support to be withdrawn, so doctors applied to the High Court for judges to decide Charlie"s future.

查理的父母不同意醫院的說法，也不希望移除查理的生命支持設備，於是醫生申請由高等法院來裁決查理的未來。

In April, the High Court agreed with the GOSH doctors.

4月份時，高等法院表示同意倫敦大奧蒙德街醫院醫生們的說法。

Charlie"s parents then appealed against the decision, but courts ruled the original decision should stand and it would be in Charlie"s best interests to be allowed to die with dignity.

查理的父母不滿判決，隨後提出上訴，但是法院決定維持原判，並且認為查理最好的歸宿就是有尊嚴地死去。

The Supreme Court and the European Court both came to the same conclusion.

最高法院與歐洲法院也得出了相同的結論。

How the campaign became world news?

這一事件為何成為了全球性新聞？

Photo: PA / Daily Mail

Although Charlie"s parents had seemingly exhausted all legal avenues, two prominent figures ensured Charlie"s case became world news: Donald Trump and the Pope.

雖然查理的父母通過法律渠道獲勝的路看上去行不通了，但是有兩位很有影響力的人物使得查理的案件變成了世界性新聞，他們就是美國總統特朗普和教皇。

Following the European Court ruling, the Pope said he was following the case "with affection and sadness".

歐洲法院的裁決宣布後，教皇稱他在關注這個案件，並且「受其影響，十分悲傷」。

A statement released from the Vatican said the Pope "expresses his closeness to his [Charlie"s] parents".

一份由梵蒂岡發布的聲明中表示，教皇「表示他與查理的父母同在」。

"For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored," it said.

聲明中稱，「教皇為他們祈禱，希望他們的願望能夠實現，他們為自己的孩子治療到最後一刻的訴求不要被忽視。」

The US president then offered his support, tweeting: "If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so."

美國總統特朗普隨即也表示支持，發推特稱「如果我們能幫助小查理·加德，就像我們在英國的朋友們以及教皇那樣，我們會很高興那樣做的。」

After his tweet, the US doctor offering the therapy, Professor Michio Hirano from Columbia University Medical Center, was contacted by the president"s team to see if there was anything more that could be done.

在特朗普發布推特後，美國哥倫比亞大學醫學中心的平野(Michio Hirano)教授與總統團隊取得聯繫，看看有沒有什麼他可以做的，並表示可以提供治療。

On 6 July, the professor co-signed a letter with other medical experts which suggested unpublished data showed therapy could improve the 11-month-old"s brain condition.

7月6日，平野教授與其他醫學專家共同簽署了一封信件，表示未公布的數據表明，通過治療，這個11月大的孩子的腦部狀況能夠獲得改善。

They claimed that "ideally" the treatment would first be tested on mice but said that, in Charlie"s case, there was no time for such a trial.

他們宣稱，「理想狀態」下，治療將在老鼠身上先進行實驗，但是在查理的案件中，已經來不及做實驗了。

Why did the case return to the courts?

為什麼案件最終回歸法庭？

Photo: AFP / BBC

It was this unpublished data that prompted GOSH to apply to the High Court for a fresh hearing "in light of claims of new evidence" relating to potential treatment for Charlie"s condition.

這些未公布的數據促使倫敦大奧蒙德街醫院向高等法院申請舉行新的聽證會，「隨著新的證據的公布，查理的病情可能有潛在的治療方法」。

Under the initial High Court ruling, Charlie was not allowed to be transferred anywhere to be treated so it asked the court to examine the new evidence.

根據高等法院的初始判決，查理不允許被轉移至任何地方接受治療，所以醫院要求法院審查新的證據。

During this time, Professor Hirano flew over from America to examine Charlie.

在此期間，平野教授從美國來到英國，查看查理的狀況。

What has the public reaction been?

公眾對此作何反應？

Photo: Matt Dunham / AP / nytimes

Charlie"s plight has proved to be very divisive.

面對查理遇到的困境，公眾意見是分裂的。

Some people felt Charlie should be allowed to die with dignity, while others have disagreed with the doctors, arguing Charlie"s parents should be allowed to decide where he is treated.

有人認為查理應該被允許有尊嚴地死去，也有人不同意醫生的觀點，認為查理的父母有權決定帶他去哪裡接受治療。

At one point the hospital said staff had received death threats and police had been called after other families, whose children were being treated at the hospital, had been harassed.

醫院稱，有一段時間裡，醫院工作人員受到了死亡威脅，還曾因為其他家庭的孩子在醫院治療時受到騷擾而報警。

Charlie"s parents said they did not condone the abuse and had also faced "nasty and hurtful remarks".

查理的父母表示，他們不能寬恕這種虐待行為，也面臨著一些「令人討厭的、傷人的言論」。

最終，平野醫生在檢查過查理的狀況後表示，現在治療已經太遲了，而查理的父母得知此事後，徹底放棄了通過法律訴訟帶查理赴美治療的想法。

於是，當地時間7月27日，查理被送往臨終關懷安養院，度過生命的最後時刻。28日，呼吸機等生命支持設備被移除，查理逝世。

Photo: Featureworld / Daily Mail

小查理的父母敢於與法律抗爭，「不離不棄」的心態感動了無數人，而小查理本人也堅強地與病魔抗爭到了最後一刻。他的離去轟動了全世界，也留給了世人更加寶貴的關於倫理的思考。

BBC有一部紀錄片，講述漸凍症患者自己選擇接受安樂死，並記錄了全過程，曾經讓許多觀眾感動落淚，認為他是一個勇敢的人，他的親人也尊重了他的選擇。然而看完小查理案，你還能對「有尊嚴的死亡」如此認同嗎？

當病人已經身患重症、治癒希望渺茫時，是否應該直接放棄治療，讓病人有尊嚴、無痛苦地死去？

如果答案是肯定的，那麼誰又是可以做出這種「生死判決」的人？是醫生、法庭、孩子的父母，還是老人的子女？做出「安樂死」決定，患者真正離去之後，親人能否承受？又或者是執行後又感到後悔？

如果答案是否定的，那麼親屬是否有能力投入相應的時間、精力，以及金錢，不惜一切代價去治療？如果治療帶來的是加倍的痛苦，患者自己請求放棄治療，該聽誰的？如果全力治療後，依然得到了最壞的結果，親人又能否承受？是否會感到後悔？

現代醫學在不斷進步，許多曾經被認為治不了的「絕症」也被一一攻克，但是以上這些問題，可能很難得出一個標準答案。

來源：BBC, CNN, 《衛報》, 《紐約時報》, 《每日郵報》/ 圖片除標註外均來自網路

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