「讓我有尊嚴的走」──臨終醫囑

:::

1998 / 10月

文‧李光真



法律上,「遺囑」要在死後才能生效,然而有一種囑託,同樣攸關死亡,卻是必須要在生前就生效的,那就是「醫囑」。

這是一個真實故事:

家大業大的某老先生,歷經多年病痛折磨,最後住進加護病房時已經認命,不願再做求生的掙扎。自稱「怕痛甚於怕死」的老先生,一再地交代護士不要做臨終急救,要讓他安靜的走。

不料,老先生的兒子們拿了爸爸的生辰八字去算命,算出的結論是「絕不能讓父親在某月某日某時辰以前去世,否則會『有損子孫的財運』」。問題是極度孱弱的老先生撐不住,在那「吉時」之前就「死」過五、六次了。只是求死不得的他,每次都硬生生被醫生從死神手上奪回來:一千多支的強心針,尖長的針管從體外直接插入心臟,肋骨在心肺復甦術的猛力壓擠下全數斷裂,連皮膚都因多次電擊而燒得焦黑……。這樣被翻弄、蹂躪了一個禮拜,終於拖到「吉時」,兒子們才放了老爸一條「死路」!

多活一分鐘也好?

人的死亡,本來是很自然的,一口氣接不上來就「斷氣了」;呼吸停止後,緊接著心跳也將於幾分鐘內停止,此時就是大羅天仙也回生乏術。然而,一九六○年代「心肺復甦術」的發明,配合人工呼吸器、升血壓劑、強心劑等藥物,卻使得這樣的自然死亡過程可以從中截斷,也使人類多了一項和死神拔河的利器。

「死亡的最主要原因是細胞缺氧。在溺水、觸電、心臟病突發或車禍等情形中,只要缺氧的時間不長,用『心肺復甦術』來搶救,可以使患者的呼吸、心跳又接續起來,往往能撿回一條命,」佛教蓮花臨終關懷基金會董事長、三峽恩主公醫院院長陳榮基解釋。

然而,原本用於緊急救命的心肺復甦術,在近代醫學「延命至上主義」──不管病能不能治癒,只要能多活一天、一小時甚至一分鐘,就要全力救治──的觀念下,目前已廣泛應用於各類臨終病人。不管是纏綿病榻多時的癌末病人,或是因糖尿病、肝病等痼疾而導致的多重器官衰竭,都在心肺復甦術的適用範圍內。

「延長壽命雖然是醫生的職責,然而仔細想想,加護病房裡的病患哪怕是做了全套的急救處理,也往往拖不過幾天。既然如此,何必大費周章,弄得病人痛苦,醫療資源也浪費了?」天主教康泰醫療教育基金會董事長、新店耕莘醫院副院長鄧世雄說。

同樣的疑問,也存在家屬心中。

在出版社上班的周小姐回憶自己婆婆臨終前,為了急救而進行「氣管內插管」,粗大的管子深深插進喉嚨,婆婆不僅沒有辦法交代遺言,而且嘴巴僨張的猙獰面貌,和平日的安詳和氣完全不同,讓她看了又驚又痛。

既是如此,為什麼還要勉強施行臨終急救呢?

不敢不救

「婆婆生前沒有交代過這些事,我們也從來不知道臨終急救會這麼『殘忍』,」周小姐說,當時家人只是出於單純的孝心,希望能將婆婆留到「最後一分鐘」;縱使她隱隱覺得不妥,但為了怕被指為「不孝」而不敢開口。

站在醫師的立場,則是另一種顧慮:「我們都被醫療法第四怳T條卡死了,」鄧世雄無奈地說。醫療法中規定,醫院必須「採取一切必要措施」來救治病人,因此為了避免被病患家屬一狀告到法院,即使明知病患「百分之二百救不活」, 醫師也會急救到底。

恩主公醫院的安寧居家專科護理師高碧月則透露,有時實在覺得荒謬時,她會「做做樣子」,譬如原本要在病患胸腔上大力壓擠怳膜蝒漱O量,她只壓五公斤。縱使如此,臨終者的痛苦不安還是令她深覺不忍;這是她白衣生涯中最難過的事之一。

為了將醫、病雙方從這種困境中解放出來,目前屬佛教的蓮花臨終關懷基金會、屬天主教的康泰醫療教育基金會,及中華安寧照顧協會等宗教、醫療組織,目前正推動「預立醫囑」活動,希望大家都能在健康時寫下自己的「醫療囑咐」,一方面減少醫師及家屬的困擾,一方面保護自己不受臨終「酷刑」。

對許多人來說,「醫囑」是前所未聞的新觀念,目前台灣只有在以收容癌症末期病患為主、並且強調「安寧死」理念的安寧病房中,才會要求病患家屬簽署「放棄急救聲明」。

荒謬的是,即使病患本人簽署了白紙黑字的放棄急救同意書,或是生前就一再口頭表示過不要急救,然而在目前「醫囑」還不具備法律效力前,這些都只是臨終者的「心願」,要不要遵守,還得看家屬的意思。

「家屬的權力大過臨終者,」高碧月說,如果家屬為了種種理由,像是要拖到「吉時」、要等國外的長子回來送終等而堅持要救,醫生也不敢不照辦。

密密麻麻寫「醫囑」

為此,「我們希望『醫囑』要和『遺囑』一樣具有法律效力,任何人都不能違反臨終者本人的意願,」成大醫學院護理學系副教授趙可式強調。目前醫界及宗教界正共同推動「緩和醫療條例」,明訂罹患不可治癒之末期(預期短期內會死亡)病人,可以依照其意願,賦予醫師不做臨終急救的權利。這份草案已送交立法院,目前正苦等通過立法程序。

「在先進國家如美國,『預立醫囑』是怳懂飪M的事,」趙可式回憶當年赴美留學時,看到同學們在自己的醫囑上密密麻麻寫了一大堆「預立指示」,包括在什麼樣的病情下允許醫師在自己的身體上插管子或開洞、什麼狀況下就希望停止治療等,明確地表達出對自己「醫療自主權」和「身體權」的護衛。這份醫囑夾在醫院病歷的首頁,除了病人自己突然改變心意外,其他任何人都不能違背。

當然,微妙精密如人體,總有許多立囑人考慮不到的突發狀況,譬如中風深度昏迷,掌管呼吸心跳的腦幹已失去反應(即所謂「腦死」),在這種情況下,病人可能幾分鐘內死亡、但也可能拖到兩個禮拜;然而不論長短,死亡是必然的。那何時可拔掉呼吸器?誰來決定?這時可以請醫囑中指定的「預立醫療代理人」做全權決定。

「這位『醫療代理人』必須很了解你對生死的看法,通常是最親近的家人,」趙可式說。當然,不管立囑人或代理人,既然想要掌握臨終的醫療處置,平日就要涉獵醫學常識,「像鼻胃管、導尿管、中心靜脈輸液導管、氣管內插管……,這些管子每個人都可能會用得到。它們有什麼功用,做起來多痛苦,你總要有一點瞭解吧。」

此外,為了怕醫院會因為節省醫療資源、或是怕家屬會逼迫久病的病人提早放棄急救,因此預立醫囑必須經過很慎重的法律程序。在美國,一般州政府規定要有兩位以上的見證人,有的州還需要有律師簽字才能生效。

「慎終」與「善終」

陳榮基則解釋,目前國內醫囑的設計,主要適用於罹患慢性病、特別是癌末或多重器官衰竭的末期病人;因為這類病症好轉的機會渺茫,而且可預期即將死亡,因此簽署醫囑,重點放在「拒絕做心肺復甦術之類的臨終急救」,即所謂的DNR。

至於急性受傷的病人,不管是車禍、溺水甚至腦中風,因為不知道病人的生命力有多強、預後好不好,因此多半會「無條件救到最後一分鐘」;縱使存活下來卻成了植物人,站在宗教團體尊重每一個生命的立場,也是無怨無悔的。

「『預立醫囑』不光是法律或醫學層面的事,最重要還是要建立正確的死亡觀,畢竟生命的價值不是用長短去衡量的,」積極提倡「自然死」、「安寧死」的趙可式認為,中國人一向講求「慎終」與「善終」,何妨生前立下醫囑,讓自己有尊嚴的走。

p.88

冰冷器械環伺、身上插滿管子,這樣的臨終景象,已備受質疑。(張良綱攝)

相關文章

近期文章

EN

Living Wills-- Letting Dying Patients Go with Dignity

Laura Li /photos courtesy of Pu Hua-chih /tr. by Jonathan Barnard


Legally, a person's last will and testa-ment doesn't go into effect until after that person dies. Yet there is one kind of will that concerns both the living and the dead, which must go into effect before one dies: a living will.

This is a true story:

An elderly man with a large fortune was tortured for years by illness. When he finally ended up in an intensive-care room, he no longer wanted to struggle against death and was ready to leave this world. The man, who said he was "more scared of pain than death," time and again asked the nurse to just let him go peacefully and not resuscitate him if death was near.

But then the old man's sons took his birthday and time of birth to a fortune teller, who told them, "Under no circumstances let your father die before a certain date, or it will be disastrous for the fortunes of his descendants." The problem was that this extremely weak old man was barely holding on by a thread and nearly died five or six times before the appointed hour. Each time, this man who had said he just wanted to go peacefully was yanked back from the brink of death by his doctors. He received more than a thousand heart stimulant injections, for which a long and sharp needle must pierce the heart itself. The extreme pressure from the CPR which he received on numerous occasions had left several of his ribs broken. And his skin had turned black, burned by the repeated electrical charges. . . . He was tossed about in this manner for a week until the appointed time arrived and his sons finally sent their father on his way!

Is a minute more worth the pain?!

Death used to be something natural: when you ceased breathing, your heart would stop a few minutes later, and at that point even the gods couldn't bring you back to life. Then, cardiopulmonary resuscitation (CPR) was invented in the 1960s, and in conjunction with respirators, heart stimulants and other new medical technology, it provided a way of stopping the process of death half way through and turning back. It was a major weapon in man's life-and-death tug of war with nature.

"The main cause of death is that cells lack oxygen," explains Chen Rong-chi, president of the Lotus Hospice Foundation and director of Sanhsia's En Chu Kong Hospital. "When people have drowned, been electrocuted, suffered heart attacks or been in auto accidents, as long their cells haven't been without oxygen for more than eight minutes, CPR may be able to bring them back. If you can get them breathing and their hearts beating again, you've always got a shot at saving them."

But the use of CPR, which was originally intended for saving lives in medical emergencies, has been commandeered by the extend-life-at-all-costs philosophy of the modern medical era. Whether or not their illnesses are curable, if patients can be made to live another day, another hour, or even another minute, all efforts are made to save them. It doesn't matter if patients have long been suffering with terminal cancer or their organs are greatly debilitated from long-term chronic illnesses such as diabetes or liver disease-all patients are included among the ranks of those who will get CPR.

"Although extending life is the professional responsibility of doctors, consider the situation carefully. Many patients in intensive-care wards are going to live for only a few more days-even if all efforts are made to extend their lives. Why go to all the trouble and waste medical resources when you're just going to cause the patient great pain?" asks Lin Shih-hsiung, head of the Catholic Sanipax Socio-medical Service and Education Foundation and assistant director of Cardinal Tien Medical Center in Hsintien.

The same sort of doubts can be included in a will.

A Miss Chou, who works for a publisher, recalls that when her mother-in-law was close to death, they shoved a thick tube down her throat to keep her breathing, which not only made it impossible for her to give instructions but also twisted her mouth into hideous shapes. It was such a contrast from her usual calm and peaceful visage, and made her look both scared and in pain.

Why force emergency resuscitation on patients near death anyway?

Not daring not to resuscitate

"My mother-in-law had never given us any instructions, and we never expected the measures taken to be so cruel," says Chou. At the time, the family simply wanted to do the proper, filial thing, hoping to extend her life until "the last possible moment." Even if Chou herself felt vaguely that something wasn't right, she feared that others would accuse her of being unfilial, and so kept her mouth shut.

Doctors have another consideration: "We are all caught by article 43 of the medical code," says Kuo Shih-hsiung with frustration. This medical regulation states that hospitals must "take all necessary measures" to save a patient. To prevent the family members of patients from suing, hospitals exhaust all possible medical avenues even when they are 200% sure a patient can't be saved.

Kao Pi-yueh, a nurse at the hospice at En Chu Kong Hospital, admits that when she thinks the situation is particularly absurd, she will sometimes just "go through the motions." For instance, if she is supposed to apply ten kilos of pressure on a patient's chest, she may only apply five. Be that as it may, the pain and distress experienced by patients near death deeply trouble her, and her complicity in them is what bothers her most about her work as a nurse.

In order to release both patients and medical workers from this predicament, religious and medical organizations such as the Buddhist Lotus Hospice Care Foundation, the Catholic Sanipax Socio-medical Service and Education Foundation, and the Taiwan Hospice Association have formed a living-will movement, urging everyone to write down instructions about their medical treatment while they are still healthy. This would release medical workers and patients' loved ones from their moral quandary and the patients from their pain.

For many, a living will is a completely new idea. Now in Taiwan, only hospices that primarily serve terminal cancer patients ask their patients if they want to sign "do not resuscitate" (DNR) orders.

What's most ridiculous is that even if patients have signed clear DNR agreements or have said repeatedly that they do not wish to be revived, living wills are not legally binding and just represent the patients' wishes. Whether these wishes should be respected is something for their families to decide.

"The family's power is greater than the patient's," says Kao Pi-yueh. If the family for any number of reasons insists that the patient be resuscitated-say because they want to wait for a more auspicious time or the return of the eldest son from overseas, then the doctors dare not disobey them.

Going into detail

Hence, those promoting living wills "hope they can gain the same legal authority as regular wills, so that the patient's own wishes take precedence," says Chao Ko-shih, an assistant professor of nursing at the National Cheng Kung University College of Medicine. Currently, members of the medical and religious communities are working together to "moderate medical regulations" so that they clearly state that patients with untreatable cancer who are near death have the right to refuse emergency resuscitation. These revisions have been submitted to the Legislature, and are now winding their way through the legislative process.

"In advanced nations like America, preparing a living will is quite common," says Chao, who recalls that when she was studying in America she saw her classmates writing a lot of "advanced directives" in their living wills, including under what circumstances of illness doctors could cut their skin or insert tubes, and under what circumstances treatment should stop. They were using the wills to protect their "medical autonomy" and right to make decisions about their own body. If a patient has a living will, it is inserted on the front of a patient's medical history file. Unless patients themselves change their minds, no one has the right to disobey its commands.

But with something as marvelously complex as the human body, there are always eventualities that can not be predicted in a living will. For instance, when a patient falls into a deep coma as a result of a stroke, the brain stem that controls cardiopulmonary functions may become completely unresponsive (resulting in brain death). In such circumstances, a patient could die in a few minutes or might survive for two weeks, but death is assured. When can the respirator be turned off? Who is to decide? In such a situation, the person appointed as the patient's agent in his living will can make the decision on the patient's behalf.

"This agent must deeply understand your beliefs about living and dying. Usually it is a close relative," says Chao. "Of course, both makers of wills and their agents should right away gain some common medical knowledge, including an understanding of feeding and fluid tubes, dialysis, intravenous lines and mechanical respirators. One should know about their functions and how much pain they might cause before getting seriously ill."

What's more, in order to prevent a hospital eager to save resources or a family of a patient with a long-term illness from pushing to cease resuscitation efforts on a patient too early, the living will must pass through a carefully designed legal process before becoming valid. Most states in America require at least two witnesses, and some states require a lawyer's signature as well.

Proper funerals, proper deaths

On the other hand, Chen Rong-chi explains that in Taiwan most living wills are designed for sufferers of long-term chronic illnesses, especially patients in the late stages of cancer or those with several severely weakened internal organs. Because there is little likelihood that these patients' conditions will take a turn for the better and it can be safely assumed that they will die, the focus of their living wills is usually a DNR order.

For patients who are victims of auto accidents, drownings, strokes or similar medical emergencies, because it is impossible to determine their chances at survival at that moment, typically all attempts at resuscitation will be made. Even if they become comatose "vegetables," from the standpoint of religious groups which respect the sanctity of each life, there should be no second thoughts.

"Establishing a living will is not exclusively a legal and medical matter. What's most important is establishing a good attitude about death, so that the value of a life is not judged entirely by its length," argues Chao, who is actively promoting "dying naturally and peacefully." Why shouldn't Chinese, who have always put a stress on proper funerals and death with dignity, establish living wills to ensure that they will leave this world the right way?

p.88

Surrounded by cold machines and tanks of gas and fluids, the body is hooked up to all manner of wires and tubes. . . Many have doubts about this kind of near-death scene.

X 使用【台灣光華雜誌】APP!
更快速更方便!