Death and Dignity：A Case of Individualized Decision Making

Death and Dignity：A Case of Individualized Decision Making

死亡與尊嚴：個人化的自決過程

Diane was feeling tired and had a rash. A common scenario, though there was something subliminally worrisome that prompted me to check her blood count. Her hematocrit was 22, and the white-cell count was 4.3 with some metamyelocytes and unusual white cells. I wanted it to be viral, trying to deny what was staring me in the face. Perhaps in a repeated count it would disappear. I called Diane and told her it might be more serious than I had initially thought-that the test needed to be repeated and that if she felt worse, we might have to move quickly. When she pressed for the possibilities, I reluctantly opened to the door to leukemia. Hearing the word seemed to make it exist. "Oh, shit!" she said. "Don't tell me that." Oh shit! I thought, I wish I didn't have to.

Diane覺得疲勞而且產生了皮疹。這樣的場景並不少見，但下意識的擔憂促使我追蹤了她的血球數。她的血容比是22，白血球顯示4.3，並伴隨著後髓細胞和不尋常白血球的增加。我希望是病毒引起的，試圖去否認那些正瞪視著我的東西。也許再追蹤它們就會不見了。我打給Diane並告訴她狀況可能比我預想的嚴重，因此我認為需要回來複檢，如果她感覺更不適，我們的動作就要快些。她迫使我把可能性講出來，我不情願地說出了「白血症」。聽到這詞彷彿它已經存在似的。「噢，可惡！」她說。「不要這樣告訴我。」「噢，可惡！我想，我希望我不需要面對。」

Diane was no ordinary person (although no one I have ever come to know has been really ordinary). She was raised in an alcoholic family and had felt alone for much of her life. She had vaginal cancer as a young woman. Through much of her adult life, she had struggled with depression and her own alcoholism. I had come to know, respect, and admire her over the previous eight years as she confronted these problems and gradually overcame them. She was an incredibly clear, at times brutally honest, thinker and communicator. As she took control of her life, she developed a strong sense of independence and confidence. In the previous 3 ½ years, her hard work had paid off. She was completely abstinent from alcohol, she had established much deeper connections with her husband, college-age son, and several friends, and her business and her artistic work were blossoming. She felt she was really living fully for the first time.

Diane不是一個普通人（當然我也不曾認識過誰是真正普通的）。她來自一個酗酒的家庭中，大半輩子都覺得孤獨。她年輕時曾罹患陰道癌。成人之後，她泰半都在與自己的憂鬱症和酗酒傾向搏鬥著。八年前，我認識她，並帶著敬意地看著她逐漸面對並克服這些問題。她是如此不可置信地清晰，並是個幾近殘忍地誠實的思想者與溝通者。當她逐漸拿回生命的主控權，也感受到了前所未有的獨立與自信。在之前的三年半，她的努力完全獲得回報。她戒了酒，並與自己的丈夫、大學年紀的兒子以及幾位朋友建立了更深刻的連結，她的事業與藝術工作也逐漸綻放。這是她第一次感覺真正活著。

Not surprisingly, the repeated blood count was abnormal, and detailed examination of the peripheral-blood smear showed myelocytes. I advised her to come into the hospital, explaining that we needed to do a bone marrow biopsy and make some decisions relatively rapidly. She came to the hospital knowing what we would find. She was terrified, angry, and sad. Although we knew the odds, we both clung to the thread of possibility that it might be something else.

毫不意外地，她複檢的血液仍是異常的，周邊血液抹片裡出現了髓細胞。我建議她來一趟醫院，解釋我們必須儘快進行骨髓切片、以及其他的決定。到達醫院前她就知道我們將會發現什麼。她飽受驚嚇、憤怒而且傷心。儘管我們都知道困難重重，還是希望答案不會是我們想的那樣。

The bone marrow confirmed the worst: acute myelomonocytic leukemia. In the face of this tragedy, we looked for signs of hope. This is an area of medicine in which technological intervention has been successful, with cures 25 percent of the time-long-term cures. As I probed the costs of these cures, I heard about induction chemotherapy (three weeks in the hospital, prolonged neutropenia, probable infectious complications, and hair loss; 75 percent of patients respond, 25 percent do not). For the survivors, this is followed by consolidation chemotherapy (with similar side effects; another 25 percent die, for a net survival of 50 percent). Those still alive, to have a reasonable chance of long-term survival, then need bone marrow transplantation (hospitalization for two months and whole-body irradiation, with complete killing of the bone marrow, infectious complications, and the possibility for graft-versus-host disease-with a survival of approximately 50 percent, or 25 percent of the original group). Though hematologists may argue over the exact percentages, they don't argue about the outcome of no treatment-certain death in days, weeks, or at most a few months.

骨髓切片的結果做了最壞的證實：急性骨髓性白血病。在這悲劇面前，我們依舊尋找希望。至少現今的科技在這個領域是相對成功的，有25%的病人可以達到長期治癒的效果。當我調查了治療的細節，聽到了關於誘導化療：三週的住院、延長的血球低下、感染併發症、掉髮，且只有七成五的病人會產生反應。至於存活者，要接受鞏固化療，副作用與誘導化療相去不遠，但會有二成五的病人捱不過這個階段，也就是只剩下五成的病人會存活。餘下的，為了要獲得更大的長期生存機會，需要接受骨髓移植（住院兩個月，全身接受放射線治療、將骨髓細胞全部擊斃，感染併發症、移植物對抗宿主反應，這過程將再失去一半的人，也就是只剩下二成五的病人能倖存）。血液腫瘤科醫師可能會對真實的數據有所爭執，但他們絕不會對於沒有治療而在數天、數週或數月後所到來的死亡之確定性爭執。

Believing that delay was dangerous, our oncologist broke the news to Diane and began making plans to insert a Hickman catheter and begin induction chemotherapy that afternoon. When I saw her shortly thereafter, she was enraged at his presumption that she would want treatment, and devastated by the finality of the diagnosis. All she wanted to do was go home and be with her family. She had no further questions about treatment and in fact had decided that she wanted none. Together we lamented her tragedy and the unfairness of life. Before she left, I felt the need to be sure that she and her husband understood that there was some risk in delay, that the problem was not going to go away, and that we needed to keep considering the options over the next several days. We agreed to meet in two days.

延遲治療確信是危險的，我們的腫瘤科醫師將消息告知Diane並開始擬定放置希克曼導管以利進行誘導化療的計畫。當我之後短暫的見到她，她對於推定她願意治療的假設感到憤怒，並且完全被確定的診斷給摧毀了。她只想要回家見她的家人。對於治療她一個都不想要，甚至連進一步的問題都沒有。我們一起哀嘆這個悲劇並且抱怨生命的不公平。在她離去之前，我覺得必須要確定她和她的先生明白延遲治療的風險，問題不會就此消失，在接下來的幾天之內我們還是必須持續考慮治療的選項。因此我們同意兩天內再次碰面。

She returned in two days with her husband and son. They had talked extensively about the problem and the options. She remained very clear about her wish not to undergo chemotherapy and to live whatever time she had left outside the hospital. As we explored her thinking further, it became clear that she was convinced she would die during the period of treatment and would suffer unspeakably in the process (from hospitalization, from lack of control over her body, from the side effects of chemotherapy, and from pain and anguish). Although I could offer support and my best effort to minimize her suffering if she chose treatment, there was no way I could say any of this would not occur. In fact, the last four patients with acute leukemia at our hospital had died very painful deaths in the hospital during various stages of treatment (a fact I did not share with her). Her family wished she would choose treatment but sadly accepted her decision. She articulated very clearly that it was she who would be experiencing all the side effects of treatment and that odds of 25 percent were not god enough for her to undergo so toxic a course of therapy, given her expectations of chemotherapy and hospitalization and the absence of a closely matched bone marrow donor. I had her repeat her understanding of the treatment, the odds, and what to expect if there were no treatment. I clarified a few misunderstandings, but she had a remarkable grasp of the options and implications.

兩天後，她帶著先生和兒子回診。他們已經全面地討論了問題以及選擇。她再度清楚表達了她不想要接受化療，餘生（不管有多久）都要在醫院外度過。當我們進一步探索她的想法，她表示她相信自己會在治療中死亡、並且遭遇不可言喻的磨難與受苦（住院的過程、逐漸失去對身體自我控制的過程、化療的副作用、以及痛苦）。即使我可以盡全力地支持她、並減少這些受苦，我卻不敢說這些她所擔憂的苦難都不會發生。事實上，最後四位在我們醫院過世的白血病患者是在不同的疾病階段下於非常痛苦的情況下死去的（當然這個事實我沒有讓她知道）。她的家人希望她接受治療，但仍哀傷地接受她的決定。她非常清楚治療會帶來的副作用，而25%的存活率並不足以讓她接受這樣一個毒性如此之強的治療、也在沒有一個合適的骨髓捐贈者的情況下讓她具有住院與化療的盼望。我讓她再次表達對這些治療的理解，以及沒有接受治療的情況會是如何。我也澄清了一些誤解，但她對於選擇和決定異常堅持。

I have been a longtime advocate of active, informed patient choice of treatment or nontreatment, and of a patient's right to die with as much control and dignity as possible. Yet there was something about her giving up a 25 percent chance of long-term survival in favor of almost certain death that disturbed me. I had seen Diane fight and use her considerable inner resources to overcome alcoholism and depression, and I half expected her to change her mind over the next week. Since the window of time in which effective treatment can be initiated is rather narrow, we met several times that week. We obtained a second hematology consultation and talked at length about the meaning and implications of treatment and nontreatment. She talked to a psychologist she had seen in the past. I gradually understood the decision from her perspective and became convinced that it was the right decision for her. We arranged for home hospice care (although at that time Diane felt reasonably well, was active, and looked healthy), left the door open for her to change her mind, and tried to anticipate how to keep her comfortable in the time she had left.

長期以來，我都倡議著主動並全面地告知病患治療與不治療的資訊，並且病人有權利選擇用最有尊嚴的方式選擇並控制自己的死亡過程。但對於她放棄25%的存活機會、幾乎是確定選擇死亡的時候，我還是困惑了。我見證過Diane在面對憂鬱症和酗酒時，她內在奮鬥的歷程，因此我深自盼望她下週會回心轉意。因為有效的黃金期相當短暫，我們那週見面了好幾次。我們也尋求了第二意見，而且再次討論了治療與不治療的意義。她也與之前接觸過的心理師會談。我漸漸從她的視角中理解了她的選擇，並且逐漸被說服這是個對她最好的選擇。我們安排了安寧居家照護（即使那個時候Diane覺得一切還好，還是充滿活力、而且看起來還算健康）、一樣敞開讓她轉變心意的門戶、並試圖讓她僅餘的時間都感覺舒適。

Just as I was adjusting to her decision, she opened up another area that would stretch me profoundly. It was extraordinarily important to Diane to maintain control of herself and her own dignity during the time remaining to her. When this was no longer possible, she clearly wanted to die. As a former director of a hospice program, I know how to use pain medicines to keep patients comfortable and lessen suffering. I explained the philosophy of comfort care, which I strongly believe in. Although Diane understood and appreciated this, she had known of people lingering in what was called relative comfort, and she wanted no part of it. When the time came, she wanted to take her life in the least painful way possible. Knowing of her desire for independence and her decision to stay in control, I thought this request made perfect sense. I acknowledged and explored this wish but also thought that it was out of the realm of currently accepted medical practice and that it was more than I could offer or promise. In our discussion, it became clear that preoccupation with her fear of a lingering death would interfere with Diane's getting the most out of the time she had left until she found a safe way to ensure her death. I feared the effects of a violent death on her family, the consequences of an ineffective suicide that would leave her lingering in precisely the state she dreaded so much, and the possibility that a family member would be forced to assist her, with all the legal and personal repercussions that would follow. She discussed this at length with her family. They believed that they should respect her choice. With this in mind, I told Diane that information was available from the Hemlock Society that might be helpful to her.

當我還在調整適應她的決定時，Diane為我打開了更深刻與深奧的一面。保持自理的尊嚴在她的餘生是格外重要的。即使想要立即死亡是不太可能的事，但她確實這樣想。我曾經是一個安寧照護計畫的指導者，所以知道怎麼樣使用疼痛控制的藥物以減少患者的痛苦。我向她解釋了舒適照護的哲學、以及我對之強烈的相信。Diane能夠理解並感激這樣的舒適照護，但她也知道人們會在「相對舒適」的狀況中徘徊拖延，她完全不想要如此，她想要在最少的痛楚中獲致她的死亡。因為清楚她對於維持自我控制與獨立自理的渴望，我認為她這樣的要求充滿了合理。我肯認了她的希望，但也知道現今的醫學使得我無法完全承諾達成這一點要求。在我們的討論中，我清楚知道沒有一個平和死亡的保證將會使她的餘生都遭受歹活的恐懼佔據。但我擔心這樣一個粗暴而至的死亡會影響她的家人，或是無效自殺的後果會讓她活在自己恐懼的死亡折磨中，而當她的家人可能被迫協助她時，還必須要面對後續的法律以及個人的反彈。她與家人長談，家人也相信他們願意尊重她的選擇。因著這些想法，我告訴Diane，Hemlock Society（譯註：芹毒會，一個倡議安樂死的團體）裡應該有她需要的訊息。

A week later she phoned me with a request for barbiturates for sleep. Since I knew that this was an essential ingredient in a Hemlock Society suicide, I asked her to come to the office to talk things over. She was more than willing to protect me by participating in a superficial conversation about her insomnia, but it was important to me to know how she planned to use the drugs and to be sure that she was not in despair or overwhelmed in a way that might color her judgment. In our discussion, it was apparent that she was having trouble sleeping, but it was also evident that the security of having enough barbiturates available to commit suicide when and if the time came would leave her secure enough to live fully and concentrate on the present. It was clear that she was not despondent and that in fact she was making deep, personal connections with her family and close friends. I made sure that she knew how to use the barbiturates for sleep, and also that she knew the amount needed to commit suicide. We agreed to meet regularly, and she promised to meet with me before taking her life, to ensure that all other avenues had been exhausted. I wrote the prescription with an uneasy feeling about the boundaries I was exploring-spiritual, legal, professional, and personal. Yet I also felt strongly that I was setting her free to get the most out of the time she had left, and to maintain dignity and control on her own terms until her death.

一週後，她打電話給我，希望我開立巴比妥酸鹽幫助她的失眠問題。我知道這是芹毒會裡，自殺所使用的一個必要成分，我請她來辦公室談談。這不只是一場基於她想要保護我的關於失眠的表淺性會談，而是我必須知道她將如何使用這些藥物，以及她並不是被絕望過劇地掩蓋了她的判斷力。會談中，我們清楚知道了她確實面臨了嚴重的失眠問題，但也清楚地顯明，擁有足以致死的巴比妥酸鹽可以讓她安心、並更加聚焦於現今還僅存的生命。她並不感覺喪氣，相對的，她對於家人與親密的朋友賦予了更深入的連結。我確定了她知道如何使用巴比妥酸鹽幫助睡眠，也確定她知道足以自殺的劑量是多少。她答應定期與我會面，並承諾要結束生命之前會跟我碰面，以確定我們已經窮盡所有可行的手段了。我在一種探索了所有靈性、法律、專業和個人的界線後、無法感覺輕鬆的情緒中寫下了我的處方。當然，我因為讓她獲得了她所僅存的最大值而感受到堅強，我儘可能確保了她在死亡之前的尊嚴與自我控制。

The next several months were very intense and important for Diane. Her son stayed home from college, and they were able to be with one another and say much that had not been said earlier. Her husband did his work at home so that he and Diane could spend more time together. She spent time with her closest friends. I had her come into the hospital for a conference with our residents, at which she illustrated in a most profound and personal way the importance of informed decision making, the right to refuse treatment, and the extraordinarily personal effects of illness and interaction with the medical system. There were emotional and physical hardships as well. She had periods of intense sadness and anger. Several times she became very weak, but she received transfusions as an outpatient and responded with marked improvement of symptoms. She had two serious infections that responded surprisingly well to empirical sources of oral antibiotics. After three tumultuous months, there were two weeks of relative calm and well-being, and fantasies of a miracle began to surface.

接下來的幾個月，對於Diane是非常緊湊而重要的。他兒子離開學校待在家裡，他們可以彼此陪伴、並說一些以前沒有機會說的話。她的先生在家工作，使得他們可以有最多的相處時間。她和她的摯友聚會。我也讓她來醫院，和我的住院醫師們會談，深入並個人化地闡述她認為一個資訊充足的決策過程、拒絕治療的權利、以及病患本身並不普通的罹病過程如何與醫療系統互動等議題的重要性。當然，還是會有一些情緒和生理上的受苦。她也經歷了強烈的憤怒與哀傷。有幾次她非常虛弱，在門診接受了輸血，並且獲得了相當程度的改善。她有過兩次嚴重的感染，但對於經驗性療法的口服抗生素意外地產生效果。經歷了紛亂的三個月，有兩週的日子相對平靜、並且感覺良好，似乎奇蹟就要降臨。

Unfortunately, we had no miracle. Bone pain, weakness, fatigue, and fevers began to dominate her life. Although the hospice workers, family members, and I tried our best to minimize the suffering promote comfort, it was clear that the end was approaching. Diane's immediate future held what she feared the most-increasing discomfort, dependence, and hard choices between pain and sedation. She called up her closest friends and asked them to come over to say goodbye, telling them that she would be leaving soon. As we had agreed, she let me know as well. When we met, it was clear that she knew what she was doing, that she was sad and frightened to be leaving, but that she would be even more terrified to stay and suffer. In our tearful goodbye, she promised a reunion in the future at her favorite spot on the edge of Lake Geneva, with dragons swimming in the sunset.

然而奇蹟依舊沒有來到。骨痛、虛弱、疲憊與發燒開始主宰了她的生活。即使安寧療護人員、家人以及我試圖減低她的不適和痛苦，我們清楚知道終點近了。緊接著，我們要面對她對於越來越加劇的不適的恐懼、失能依賴、以及在疼痛和鎮靜之間的困難選擇。她給摯友打了電話，請求他們來做最後的道別，告訴他們她即將離開了。而如同我們之前所約定的，他也通知了我。當我們見面時，她很清楚她在做什麼，對於即將離世她感到悲傷與害怕，但對於活著並受苦她更是加倍恐懼。在我們的淚眼道別之中，她承諾我們將在她最愛的日內瓦湖畔重聚，那是一個會有龍在日落時嬉於水的地方。

Two days later her husband called to say that Diane had died. She had said her final goodbyes to her husband and son that morning, and asked them to leave her alone for an hour. After an hour, which must have seemed an eternity, they found her on the couch, lying very still and covered by her favorite shawl. There was no sign of struggle. She seemed to be at peace. They called me for advice about how to proceed. When I arrived at their house, Diane indeed seemed peaceful. Her husband and son were quiet. We talked about what a remarkable person she had been. They seemed to have no doubts about the course she had chosen or about their cooperation, although the unfairness of her illness and the finality of her death were overwhelming to us all.

兩天後她的先生致電給我說Diane過世了。她在那天早晨與先生和兒子做了最後的道別，並要求他們將她獨自留下一個小時。彷彿無窮無盡般的一小時後，他們發現她臥在沙發上、筆直躺著，蓋著她最愛的披肩。沒有掙扎的跡象。她看起來無比平靜。他們打電話給我問我後續該如何處理。我到達他們家，看到Diane如他們所述的平靜。她的先生和兒子相當安靜。我們一起談論了她是多麼不簡單的一個人。即使對我們來說，疾病帶來的不公平以及她的死亡對我們都是影響巨大的，他們對於她所選擇的過程以及他們為她的配合毫無質疑。

I called the medical examiner to inform him that a hospice patient had died. When asked about the cause of death, I said, "acute leukemia." He said that was fine and that we should call a funeral director. Although acute leukemia was the truth, it was not the whole story. Yet any mention of suicide would have given rise to a police investigation and probably brought the arrival of an ambulance crew for resuscitation. Diane would have become a "coroner's case," and the decision to perform an autopsy would have been made at the discretion of the medical examiner. The family or I could have been subject to criminal prosecution, and I to professional review, for our roles in support of Diane's choices. Although I truly believe that the family and I gave her the best care possible, allowing her to define her limits and directions as much as possible, I am not sure the law, society, or the medical profession would agree. So I said "acute leukemia" to protect all of us, to protect Diane from an invasion into her past and her body, and to continue to shield society from the knowledge of the degree of suffering that people often undergo in the process of dying. Suffering can be lessened to some extent, but in no way eliminated or made benign, by the careful intervention of a competent, caring physician, given current social constraints.

我打電話給法醫通報了一個安寧居家患者的死亡。當他們問及死因時，我說：「急性白血病」。對方說好，並且將指派葬儀人員過來。白血病是個事實，它並非整個故事。任何提及自殺的字眼都會引致檢警的調查、以及救護車的抵達與急救。Diane將成為驗屍官的個案、並被解剖。我與她的家人會被起訴。即使我真正相信我和他的家人給了她最好的照護、讓她自己定義了自己的極限與方向，我仍舊不敢確定，法律、社會以及專業會同意我這樣做。所以我說了「急性白血病」以保護我自己、保護Diane的過去和身體的完整，但我同時也持續對社會大眾掩蓋了病人在死亡過程中會有多受苦的歷程。受苦可以被減低，但絕無法被移除，這是在現今社會限制下一個小心翼翼的醫師所做不到的。

Diane taught me about the range of help I can provide if I know people well and if I allow them to say what they really want. She taught me about life, death, and honesty and about taking charge and facing tragedy squarely when it strikes. She taught me that I can take small risks for people that I really know and care about. Although I did not assist in her suicide directly, I helped indirectly to make it possible, successful, and relatively painless. Although I know we have measures to help control pain and lessen suffering, to think that people do not suffer in the process of dying is an illusion. Prolonged dying can occasionally be peaceful, but more often the role of the physician and family is limited to lessening but not eliminating severe suffering.

Diane教會了我可以提供人們幫助的範圍，並讓他們說出究竟他們需要什麼。她教會我生死、誠實，並且如何四面地面對並掂量悲劇、在它直撲而來的時刻。她也教會我當我真的了解並且在意某個人時，我可以冒點小小的險。儘管我不是直接協助她的死亡，我間接地幫助她達到了一個相對成功、無痛苦的過程。雖然我知道我們有辦法控制疼痛和受苦，但想要病人在死亡過程中幾乎沒有受苦簡直是幻想。延長的瀕死過程有時會是平和的，但大多數的時候，醫師與家人只能達到有限的緩解而不是抹滅巨大的痛苦。

I wonder how many families and physicians secretly help patients over the edge into death in the face of such severe suffering. I wonder how many severely ill or dying patients secretly take their lives, dying alone in despair. I wonder whether the image of Diane's final aloneness will persist in the minds of her family, or if they will remember more the intense, meaningful months they had together before she died. I wonder whether Diane struggled in that last hour, and whether the Hemlock Society's way of death by suicide is the most benign. I wonder why Diane, who gave so much to so many of us, had to be alone for the last hour of her life. I wonder whether I will see Diane again, on the shore of Lake Geneva at sunset, with dragons swimming on the horizon.

我疑惑著，有多少家屬和醫師在巨大的苦痛中私底下協助病人跨越生死的界線。我疑惑著有多少極度痛苦的病人在絕望中孤獨地結束自己的生命。我不曉得Diane的形象會如何留存在她家人心中，或是他們記得更多的是他們共度的最後歲月。我想著Diane在生命的最後幾個小時是否掙扎過、也想著芹毒會的自殺方式是否是良善的。我想著為何給予我們如此之多的Diane，在生命的最後一個小時必須要獨自度過。我想著我是否會再見到Diane，如她所言，在日落之時，有龍馳泳在地平線的日內瓦湖畔。

Timothy E. Quill, M.D.

Printed in The New England Journal of Medicine, March 7, 1991, Vol. 324, No. 10, pp 691-694.