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安樂死:一位醫生的人生選擇

In Ill Doctor, a Surprise Reflection of Who Picks Assisted Suicide
安樂死:一位醫生的人生選擇

SEATTLE — Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that an untimely death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.

西雅圖——理查德·韋斯利(Richard Wesley)醫生患有肌萎縮性脊髓側索硬化癥。這種無藥可治的疾病讓他的肌肉麻痹無力,但頭腦卻完好無損。他深知命運無常,死之將至,但聊以慰藉的是,他可以決定何時、何地、以及如何告別人世。

Under Washington State’s Death With Dignity Act, his physician has given him a prescription for a lethal dose of barbiturates. He would prefer to die naturally, but if dying becomes protracted and difficult, he plans to take the drugs and die peacefully within minutes.

根據華盛頓州的《尊嚴死亡法案》(Death With Dignity Act),韋斯利的醫生給他開具了足以致死劑量的巴比妥類藥物處方(一系列具有鎮靜催眠作用的藥物——編者注)。韋斯利更愿意自然離世,但如果死亡過程變得持久且痛苦,他便計劃服下藥物,在幾分鐘內安詳長眠。
 

理查德·韋斯利醫生在2008年被查出得了肌萎縮性脊髓側索硬化癥。圖為他在家中,與妻子和兩個孩子在一起。

“It’s like the definition of pornography,” Dr. Wesley, 67, said at his home here in Seattle, with Mount Rainier in the distance. “I’ll know it’s time to go when I see it.”

“這和色情片的定義差不多,”67歲的韋斯利醫生在他位于西雅圖、可以遙望雷尼爾山的家中說道,“我自己看一眼,就知道判斷的標準是什么。”

Washington followed Oregon in allowing terminally ill patients to get a prescription for drugs that will hasten death. Critics of such laws feared that poor people would be pressured to kill themselves because they or their families could not afford end-of-life care. But the demographics of patients who have gotten the prescriptions are surprisingly different than expected, according to data collected by Oregon and Washington through 2011.

繼俄勒岡州之后,華盛頓州也通過法案,允許身患絕癥的病人臨終時從醫生處獲取可以加速其死亡的藥物的處方。這類立法常招致非議,反對者擔心家境窘迫的人會迫于自己或家人無力負擔臨終護理的開支而自殺。但2011年全年由俄勒岡州和華盛頓州收集的數據卻表明,那些真正拿到“安樂死處方”的患者,其個人情況與此前預想的大為不同。

Dr. Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well educated and financially comfortable. And they are making the choice not because they are in pain but because they want to have the same control over their deaths that they have had over their lives.

韋斯利醫生是受益于這項法案的患者中的典型代表。他們中絕大多數是白人,受過高等教育,經濟狀況良好。此外,他們做出決定的原因不是因為身體上的痛苦,而是因為想要對自己的生活和死亡擁有同等程度的掌控力。

While preparing advance medical directives and choosing hospice and palliative care over aggressive treatment have become mainstream options, physician-assisted dying remains taboo for many people. Voters in Massachusetts will consider a ballot initiative in November on a law nearly identical to those in the Pacific Northwest, but high-profile legalization efforts have failed in California, Hawaii and Maine.

舍棄激進的治療方案,預先設立醫療指示(advance medical directives,也稱預立醫囑,人們在健康或還未失去理性決定能力時以書面形式指明特定情況下自己偏好的治療方式,例如不使用心肺復蘇術及生命維持系統等——編者注)和選擇臨終關懷及姑息療法已經逐漸成為病人的主流選擇。盡管如此,對于許多人來說,由醫生協助病人結束生命仍屬禁忌話題。馬薩諸塞州的選民今年11月或許會以不記名投票方式對一項與俄勒岡和華盛頓兩州立法類似的法案進行表決,但在加利福尼亞州、夏威夷州和緬因州,此前引人矚目的相關立法嘗試卻遭遇失敗。

Oregon put its Death With Dignity Act in place in 1997, and Washington’s law went into effect in 2009. Some officials worried that thousands of people would migrate to both states for the drugs.

俄勒岡州1997年通過了該州的《尊嚴死亡法案》,華盛頓州的法案也在2009年正式生效。官方人士一度擔心,會有成千上萬的人移居到這兩個州以獲得藥物。

“There was a lot of fear that the elderly would be lined up in their R.V.’s at the Oregon border,” said Barbara Glidewell, an assistant professor at Oregon Health and Science University.

“很多人擔心,老年人會開著他們的旅行房車在俄勒岡邊境排起長隊,”俄勒岡健康與科學大學(Oregon Healthand Science University)的助理教授芭芭拉·格萊德韋爾(Barbara Glidewell)說。

That has not happened, although the number of people who have taken advantage of the law has risen over time. In the first years, Oregon residents who died using drugs they received under the law accounted for one in 1,000 deaths. The number is now roughly one in 500 deaths. At least 596 Oregonians have died that way since 1997. In Washington, 157 such deaths have been reported, roughly one in 1,000.

那種場面并未出現,盡管從該項法案中獲益的人數確實有所增加。最初幾年里,援引該法案獲得藥物并借助藥物離世的俄勒岡州居民僅占該州總死亡人數的千分之一?,F在,數字上升為約500分之一。1997年以來,至少有596名俄勒岡居民以此種方式去世。在華盛頓州,有記錄可查的該類死亡有157起,約為千分之一。

In Oregon, the number of men and women who have died that way is roughly equal, and their median age is 71. Eighty-one percent have had cancer, and 7 percent A.L.S., which is also known as Lou Gehrig’s disease. The rest have had a variety of illnesses, including lung and heart disease. The statistics are similar in Washington.

在俄勒岡州,選擇這種死亡方式的男性和女性人數大致相同。他們的中位年齡為71歲。其中81%的人患有癌癥,7%的人患肌萎縮性脊髓側索硬化癥,這種病也被稱為葛雷克氏癥。剩下的人則身患包括肺心病在內的多種疾病。華盛頓州的數據也大體相似。

There were fears of a “slippery slope” — that the law would gradually expand to include those with nonterminal illnesses or that it would permit physicians to take a more active role in the dying process itself. But those worries have not been borne out, experts say.

有人擔心會由此導致“滑坡效應”——法案適用人群可能會逐漸擴展到并非患有惡性晚期疾病的人身上,它還可能助長醫生主動加快死亡過程之風。但專家們指出,這些疑慮迄今為止并未得到證實。

Dr. Wesley, a pulmonologist and critical care physician, voted for the initiative when it was on the ballot in 2008, two years after he retired. “All my career, I believed that whatever makes people comfortable at the end of their lives is their own choice to make,” he said.

身為呼吸內科專家和重癥監護醫生,韋斯利在2008年《尊嚴死亡法案》的投票公決中投了贊成票。那時他剛退休兩年。“在我的職業生涯中,我一直堅信,如何讓人在生命最終階段感覺舒適應當是患者自己的選擇,”他如此說道。

But Dr. Wesley had no idea that his vote would soon become intensely personal.

但韋斯利醫生未曾想到,他的立場會這么快便與自己的命運密切相關。

In the months before the vote, he started having trouble lifting weights in the gym. He also noticed a hollow between his left thumb and index finger where muscle should be. A month after casting his vote, he received a diagnosis of A.L.S. Patients with the disease typically live no more than four years after the onset of symptoms, but the amount of time left to them can vary widely.

投票表決前幾個月,他在健身房練習舉重時開始感覺費力。他還注意到,左手的大拇指和食指之間出現了一處凹陷,那兒本來應該是肌肉所在的位置。投票后一個月,他拿到了肌萎縮性脊髓側索硬化癥的診斷書?;加羞@種疾病的人在癥狀出現后通?;畈贿^四年,但每個人的存活時間相差可能十分懸殊。

In the summer of 2010, after a bout of pneumonia and with doctors agreeing that he most likely had only six months to live, Dr. Wesley got his prescription for barbiturates. But he has not used them, and the progression of his disease has slowed, although he now sits in a wheelchair that he cannot operate. He has lost the use of his limbs and, as the muscles around his lungs weaken, he relies increasingly on a respirator. His speech is clear, but finding the air with which to talk is a struggle. Yet he has seized life. He takes classes in international politics at the University of Washington and savors time with his wife and four grown children.

2010年夏天,一場肺炎之后,韋斯利的醫生們一致認為,他最多只剩下六個月的時間。韋斯利醫生拿到了巴比妥類藥物的處方。但他一直都沒用上這些藥物,病情的發展進程也有所延緩——雖然他如今仍只能坐在一張無法自行操作的輪椅上。他的四肢已經不能活動,肺部外圍的肌肉也衰弱無力,越來越依賴呼吸器。他的話語依然清晰,但卻上氣不接下氣。然而,他仍盡力扼住命運的喉嚨。他在華盛頓大學選修了國際政治課程,同時與妻子和四個已經成年的孩子品味著時光。

In both Oregon and Washington, the law is rigorous in determining who is eligible to receive the drugs. Two physicians must confirm that a patient has six months or less to live. And the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with A.L.S.

在俄勒岡和華盛頓,法律對于得到藥物的病人資格規定均相當嚴格。必須有兩名醫生確認病人的有生之日不足6個月。此外,病人需要兩次提出申請,中間至少間隔15天,才能最終得到藥物。他們還必須自行服下藥物。對于肌萎縮性脊髓側索硬化癥患者來說,這一點格外困難。

Dr. Wesley said he would find a way to meet that requirement, perhaps by tipping a cup into his feeding tube.

韋斯利醫生說,到時候,他會想辦法滿足要求,比如把裝在杯子里的藥物倒進喂食管里。

The reasons people have given for requesting physician-assisted dying have also defied expectations.

人們給出的關于尋求安樂死的原因也與此前設想的大相徑庭。

Dr. Linda Ganzini, a professor of psychiatry at Oregon Health and Science University, published a study in 2009 of 56 Oregonians who were in the process of requesting physician-aided dying.

2009年,俄勒岡健康與科學大學的精神病學教授琳達·甘齊尼(Linda Ganzini)發表了一項針對56名正在尋求安樂死的俄勒岡人的調查結果。

“Everybody thought this was going to be about pain,” Dr. Ganzini said. “It turns out pain is kind of irrelevant.”

“每個人都以為原因在于疼痛,但結果表明,疼痛與此根本無關,”甘齊尼指出。

At the time of each of the 56 patients’ requests, almost none of them rated pain as a primary motivation. By far the most common reasons, Dr. Ganzini’s study found, were the desire to be in control, to remain autonomous and to die at home. “It turns out that for this group of people, dying is less about physical symptoms than personal values,” she said.

當這56名患者各自提出安樂死請求時,幾乎沒有一個人將疼痛作為主要誘因。甘齊尼醫生的研究發現,最常見的原因是想要掌控自己的命運、保持自主性以及在家中壽終正寢。“結果表明,對于這群人來說,死亡更多關乎個人價值而非身體上的癥狀,”她指出。

The proposed law in Massachusetts mirrors those in Oregon and Washington. According to a telephone survey conducted in May by the Polling Institute at Western New England University, 60 percent of the surveyed voters supported “allowing people who are dying to legally obtain medication that they could use to end their lives.”

即將提交表決的馬薩諸塞州法案與俄勒岡州和華盛頓州的成法如出一轍。據西新英格蘭大學(Western New England University)民意測驗研究所(Polling Institute)5月份進行的電話調查結果,在接受調查的選民中,60%的人支持“允許臨終病人合法獲得可以用來結束生命的藥物”這一選項。

“Support isn’t just from progressive Democrats, but conservatives, too,” said Stephen Crawford, a spokesman for the Dignity 2012 campaign in Massachusetts, which supports the initiative. “It’s even a libertarian issue. The thinking is the government or my doctor won’t control my final days.”

“支持不僅來自進步派的民主黨人,也來自保守主義者,”馬薩諸塞州“尊嚴2012”運動的發言人斯蒂芬·克勞福德(Stephen Crawford)指出。他本人即是這項提案的支持者之一。“這個問題可以上升到自由意志的高度。問題本質在于,無論是政府或我的醫生都不能控制我生命最終的時光。”

Such laws have influential opponents, including the Roman Catholic Church, which considers suicide a sin but was an early leader in encouraging terminal patients to consider hospice care. Dr. Christine K. Cassel, a bioethicist who is president of the American Board of Internal Medicine, credits the church with that effort. “But you can see why they can go right up to that line and not cross over it,” she said.

此類法案也面對著影響力巨大的反對力量,其中便包括羅馬天主教會。天主教會認為自殺是一種犯罪行為,但在鼓勵臨終病人尋求臨終關懷領域卻是先行者。美國內科學委員會(American Boardof Internal Medicine)主席、生物倫理學家克里斯蒂娜·K.卡塞爾(Christine K.Cassel)認為,教會在后一項上做出不少貢獻。“但你也能明白,為什么他們可以迎頭趕上但卻不越過那條界限,”她說。

The American Medical Association also opposes physician-assisted dying. Writing prescriptions for the drugs is antithetical to doctors’ role as healers, the group says. Many individual physicians share that concern.

美國醫學會(American Medical Association)也反對醫生協助自殺。該組織稱,對于肩負著治愈者使命的醫生,開具安樂死藥物處方是不合倫理的。許多醫生私下里都持類似想法。

“I didn’t go into medicine to kill people,” said Dr. Kenneth R. Stevens, an emeritus professor of radiation oncology at Oregon Health and Science University and vice president of the Physicians for Compassionate Care Education Foundation.

“我可不是為了殺人才學醫的,”俄勒岡健康與科學大學放射腫瘤學榮休教授肯尼思·R·史蒂文斯(Kenneth R. Stevens)醫生說。他同時也是臨終關懷教育醫師基金會(Physicians for Compassionate Care Education Foundation)的副會長。

Dr. Steven Kirtland, who has been Dr. Wesley’s pulmonologist for three years, said he had little hesitation about agreeing to Dr. Wesley’s request, the only prescription for the drugs that Dr. Kirtland has written.

在過去三年中,史蒂文·柯特蘭(Steven Kirtland)一直擔任韋斯利醫生的呼吸內科主治醫生。他說,面對韋斯利的請求,他幾乎毫不猶豫便答應了。那是他開出的唯一一張安樂死處方。

“I’ve seen a lot of bad deaths,” Dr. Kirtland said. “Part of our job as physicians is to help people have a good death, and, frankly, we need to do more of that.”

“我目睹過許多糟糕的死亡事件,作為醫生,我們工作的一部分應該是幫助人們得到善終。坦白地講,我們需要在這一點上多多努力,”柯特蘭醫生指出。

Dr. Wesley’s wife, Virginia Sly, has come to accept her husband’s decision. Yet she does not want the pills in the house, and he agrees. “It just feels so negative,” she said. So the prescription remains at the pharmacy, with the drugs available within 48 hours.

韋斯利醫生的妻子弗吉尼亞·斯萊(Virginia Sly)漸漸接受了丈夫的決定。然而,她不愿意在家中存放安樂死藥物,韋斯利對此表示贊同。“那樣感覺上太消極了,”她說。于是,處方被保留在藥店中,需要時可以在48小時內拿到藥物。

There are no studies of the psychological effect of having a prescription on hand, but experts say many patients who have received one find comfort in knowing they have or can get the drugs. About a third of those who fill the prescription die without using it. “I don’t know if I’ll use the medication to end my life,” Dr. Wesley said. “But I do know that it is my life, it is my death, and it should be my choice.”

目前仍無研究表明擁有“安樂死處方”所能帶來的心理影響,但專家指出,許多一方在手的病人對于知道自己一旦有需要便可拿到藥物這件事深感欣慰。在那些憑處方拿到藥物的人中,約三分之一并未借助這些藥物告別人世。“我不知道會不會用藥物結束自己的生命,”韋斯利醫生說,“但我知道,這是我自己的生命,我自己的死亡,因此也就應該是我自己的選擇。”
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