1998 / 10月
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?
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.