Estimates put the number of persons in Taiwan in persistent vegetative states-"vegetables" as they are more commonly and coarsely known-at about 3000. Deep asleep, they are completely unaware of the passionate life-and-death discussions people are having about them.
In 1963 Wang Hsiao-min, a girl in the bloom of youth who was leader of the marching troop at the prestigious Taipei Second Girls High School, went into a permanent coma as a result of an auto accident. Her mother petitioned the Legislative Yuan to allow Hsiao-min to pass away in peace in 1982 and then again in 1985. Once she even appealed to President Lee to allow euthanasia for her daughter. But all such requests were denied. After caring for _Hsiao-min for more than 30 years, she finally passed away herself, with her heart still not at ease about her daughter's condition.
No one knows what they want
A Miss Hsu, who strongly advocates the legalization of euthanasia, wrote a poem for them. Here are two lines from it: "Sentenced to a termless stay in a prison of a bed, who will release you?" The truth is that people in persistent vegetative states are totally unconscious and have no way of expressing themselves. Is release what they want, and if so, how? And who can really know what they want? Any expression of their desire is just conjecture.
Tsao Chin, the general director of the Creation Social Welfare Foundation, who has cared for permanently comatose patients for more than 10 years, holds that these patients are unlike those with advanced cancer. They are not necessarily nearing death and are not suffering, and they are certainly not doers of evil deeds who must be executed to protect other people's lives and property. Choosing euthanasia for them would be immoral.
The Creation Social Welfare Foundation is a charitable organization that provides free care for patients in persistent vegetative states who come from low-income families. For more than a decade the organization, supported entirely by donations, has had to deal with discrimination and rejection that stems from ignorance and misconceptions. Neighbors have dumped feces in protest at the door of Creation's center, and the maintenance committee of its high rise has turned off its water-to just cite a few of many such incidents. Do people sleeping quietly in their beds really pose a grave threat to society?
Tsao Chin notes that before Creation was founded, he supported euthanasia for such patients because he sympathized with their families. But as a measure of prudence, he asked professor Chai Song-lin to help him design a questionnaire, the results of which showed that 95% of people supported care for patients in persistent vegetative states. With euthanasia illegal, hospitals unwilling to perform it, families unable to bear it, religion not permitting it and public opinion against it, Tsao changed tracks and threw himself into caring for the permanently comatose.
The average age of patients under Creation's care is 37, and the youngest is just three. These patients have all suffered severe brain damage. Still, apart from being able carry out basic pulmonary and respiratory and other bodily functions, some also show emotions such as sadness, anger and happiness. Hsu Chia-hua, who handles public relations for the foundation, points out that once members of the staff were at a patient's bedside, talking about how the patient's wife hadn't visited him for a long time, and they were startled to see that he began crying. Of the 200 patients that the center has cared for over a decade, more than ten have woken from their long slumber.
A price on life?
Public sentiment has changed greatly from what it was ten years ago, and the proportion of people supporting euthanasia has grown dramatically.
Recently Tsao appeared on a television talk show, discussing the question of euthanasia for people in persistent vegetative states. Before he gave an introduction to such patients, 85% of callers were favoring euthanasia for them. After his introduction, the figure fell a bit, but was still as high as 70%.
Some people look at it from an economic standpoint.
In earlier times, when financial resources were scarce, people had no choice but to find all sorts of ways to save resources. In India, old folk were put to sea with a small amount of food to wait for Nirvana. The Japanese film The Ballad of Narayama showed how-to ease food shortages-elderly Japanese would be left to die in the mountains.
And even today some people support euthanasia from the standpoint of saving financial resources, especially for patients in persistent vegetative states, who require great outlays of money to no noticeable effect.
According to Tsao Chin's estimates, care for one of Creation's patients costs an average of about NT$60,000 a month, a very heavy burden for a family to bear.
Wang Pang-hsiung, a professor of philosophy at National Central University, believes that arguing for euthanasia from the perspective of saving social resources is reprehensible. The nation and society, he says, ought to be doing whatever possible to protect everyone: "We first err by not fully doing our duty to protect them, and then, by not providing benevolent care, we fail to make amends. How can financial considerations be used to deny a person's right to survival?"
Tsao is even more adamant in his rejection of the financial argument. "Even criminals locked up in jail have food to eat, but no one cares about these patients." Sighing, he says that if people believe that "life is priceless," then one can't weigh life from a financial perspective. "The lives of people in persistent vegetative states should be absolutely respected the same as the lives of other people."
The last line of defense
Some argue that when persons can't express their own will, family members should be given the right to decide for them, based on the Chinese conception that "no one knows the parent like the child, no one knows the child like the parent." In this view family morality serves as the last line of defense and support.
And yet, even in the Northern Territory, Australia, where euthanasia is legal, it cannot be chosen for the comatose and others not "competent" to make a decision themselves.
Kao Ming-chien, chief of neurosurgery at National Taiwan University Hospital, believes that family-background and emotional differences could influence a family's decision regarding euthanasia.
These differences are evident in how relatives treat patients in persistent vegetative states at Creation, where foundation rules state that family members must visit patients three times a month. A Mr. Li comes every day to visit his wife who entered a coma because of electrocution. For several years running, he has come every day to remove the phlegm from her throat, sponge and wipe her, and massage her. The sister of one patient visits every day after work, and volunteers at the center on her days off. Yet the families of other patients just disappear after admission.
Hsu Chia-hua has observed that families will still have hope for two to three years after an accident, but after a patient has been in a coma for five or six years, it is hard for some not to give up hope and to become inclined to want to use euthanasia. That said, it is still uncertain how many would go through with it if really given the choice. Head Nurse Kuo Yu-chu says that when some family members come they often ask, "Why doesn't he [or she] just die, and get it over with?" But when the patient's life is threatened with illness, the same family members want the greatest possible efforts made to save them.
Tsao points out that some family members originally would like to employ euthanasia, but when they see the considerate care provided at Creation, see how the patients' bed sores are treated and how their bones begin to take on some flesh again, and when they hear that some patients have woken from comas, their hopes are revived.
Waiting for miracles
The patients that have woken have done so to varying degrees. Ding Dong's situation counts as one of the best.
The 33-year-old Ding Dong (an alias) has been a patient at Creation for more than a decade. He suffered brain injuries from an auto accident, and when he came to Creation, he was a typical "human vegetable," with no responses at all. Late one cold winter night four or five years ago, the nurse on duty was rolling the patients over, as they do every two hours, when she discovered that Ding Dong had knocked off his diaper and that the entire bed was soaked. After cleaning him up, and changing the bedding and the sheets, she couldn't help complaining, "Why did you have to do that?" To which came a wholly unexpected reply: "I don't know!"
Today, Ding Dong can hold a simple conversation, and occasionally says something that really surprises people. Kuo Yu-chu recalls one time when a co-worker kept looking at herself in the mirror, and Ding Dong, lying in bed, said off-handedly, "Enough already. You're pretty; there's no need to keep admiring yourself."
With the nurses leading, he will sing "Orchid Grass" or the theme song to the television drama "Bao Qingtian." He remembers his family's address, but when he is asked his age, he sometimes replies "19" and sometimes "16." Kuo says that his memory is stuck back at the time of the accident.
After four or five years of being conscious, his brain functions have not been completely restored. He can only move his right arm and right leg, and he can't even sit up in a wheel chair. Although he is no longer a "vegetable," he is completely bed-ridden and dependent on others' care. With his family unable to provide care, he has remained at Creation. Tsao Chin says that if Ding Dong underwent a regime of physical therapy, he could at least improve to being able to sit in a wheel chair and feed himself, but no hospital physical therapy ward will take him.
It's not just Ding Dong. With the exception of Mackay Memorial, which as a religious hospital takes all comers, hospitals refuse to admit patients who are in persistent vegetative states. They don't want them to take up scarce beds.
Who will release them?
It is impossible to know whether human vegetables want release from their lives, but their families certainly need some sort of relief. Lin Wan-yi, a professor of sociology at National Taiwan University, points out that whether or not such patients should be given euthanasia, the difficulties of those caring for them must be resolved.
Logically speaking, families have no moral duty to care for such patients without bitterness or resentment. Sun Hsiao-chih, an associate professor of philosophy at NTU, points out that saving or taking responsibility for someone else's life requires great sacrifice. So doing represents a moral ideal, not a moral duty. Someone who makes this sacrifice earns our respect, but it is a burden that should not have to fall on the shoulders of one person or one family. The nation and society have responsibility for these patients and others on the margins of society, and a responsibility to care for the weak.
Permanently comatose patients in Taiwan are listed either as "very severely" or "severely" handicapped, and the government gives NT$3000-6000 a month as a "living stipend for the handicapped" to low-income families with such patients in their care. The government gives only NT$25,000 per month to low-income families with permanently comatose patients cared for by institutions and from NT$4000-12,000 of "supplemental assistance" to families with higher incomes. While this money is of some help, it does not go very far.
Tsao Chin points out that Japan has two homes supported by car owners that specialize in taking patients in permanent comas as a result of auto accidents. Every year, Japanese car owners have to pay heavy registration fees, of which 60% go to improve transportation facilities and 40% go to support the victims of auto accidents. Other advanced nations have more complete social welfare systems, and the drain on families' time and financial resources are greatly lessened.
Should euthanasia be used to resolve the problem of people in persistent vegetative states? The answer will not only have a bearing on the very survival of 3000 such persons in the ROC, it will also point to the values of our society.
Wang Yun-lei has uncomplainingly cared for his daughter for more than 30 years. "As long as Hsiao-min has still another breath to take, I won't abandon her. And even if I pass away, her sister will continue to care for her."
Are they waiting for a miracle or for a sooner-the-better release? No one knows what patients in persistent vegetative states want, and no one can make a decision for them.