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4.5. Bad Living than Good Death? A Cultural Analysis of Family Paternalism in Death and Dying in Taiwan

- Yang, Hsiu-I
Assistant Professor of Law, SJD, Stanford Law School
Project Investigator, the Core Project on ELSI Research
sponsored by National Science Council, Taiwan

1. The Story Wang Hsiao-min: a tragedy lasting for 40 years

The morning of September 17, 1963, Wang Hsiao-min, a then 17-year-old commander of the honor guard at one of Taiwan's most renowned girls' high schools, was hit backwards by a speeding taxi on her way to school. She fell into a coma and never regains consciousness since then. Her tragedy made headlines and aroused widespread sympathy.

Two years after the accident, with the assistance of famous local musicians, Shen Hsueh-Yueng & Kuo Zheng, Wang Hsiao-min's parents took her to the Saint Vincent Hospital in New York, USA to seek miracles. Disappointingly, medical experts there confirmed with the progress that Wang Hsiao-min was in a persistent vegetative state (PVS, a condition where higher brain functions have been lost, leaving only the brain stem to perform vegetative functions of breathing, digesting, etc.) and her chance of wakening is almost none.

Taking care of Wang Hsiao-min, whose life is supported by a respirator and a feeding tube, was a demanding task but her parents took it with great love and endurance. Hoping in a 1 in a million chance of recovery, Wang's parents took care of her in home for the rest of their lives. Although Wang Hsiao-min is in a coma, she does not lie there quietly as though she is sleeping. Instead, her head moves around occasionally, and she makes little noises, like moans. Probably because of these signs, Wang's father and mother could not reach agreement about her recovery. Despite of the objection from her husband, Zhao Shi-nian, Wang Hsiao-min's mother, made a painfully decision in 1982, to file petitions to various authorities in the Taiwanese government including the President, to ask for a legalized euthanasia for her daughter, who, to the mother's opinion, had led a "worst than dead" living for almost twenty years. Zhao Shi-nian's efforts had prompted several legislative proposals (ironically enough that none of the these proposals would be applicable to Wang Hsiao-min's case) but none ever became laws. Keeping taking care of Wang Hsiao-min in another 14 years, Zhao Shi-nian died of cancer in 1996[1] , leaving the care-taking task to Wang's father alone, who passed away 3 years later in the March of 1999.

What a tragedy that Wang Hsiao-min outlives her parents in such a situation! Wang Hsiao-min is still alive[2] ; she is fifty-seven years old now, lying in bed for almost 40 years.

2. Making a end-of-life decision in Taiwan

The tragedy of Wang Hsiao-min would have ended long before if there were not the interference of modern medicine. Without the support of a respirator and a feeding tube, Wang Hsiao-min would die naturally because of suffocation or dehydration within days, rather than suffering for decades. Are people entitled to refuse such treatment so that they can die naturally? This question has been vigorously debated in the United States and most Western countries since 1970s under the name of "passive euthanasia," "right to refuse treatment," "right to die," and so far pretty much rest on the affirmative answer. With the advancement of modern medicine, which is capable of maintaining a living form at the cost of unbearable living quality, the Western ethics of medicine have transformed from the absolute supremacy of human life to individual autonomy; the absolute of "saving life" has finding the middle ground with "letting die."

Though the law has generally acknowledged a patient's right to refuse life-sustaining and life-maintaining treatment, what if the patient is incompetent to express such wishes? Who, by what standard, can make the end-of-life decision for the incompetent patient? In the United States, the celebrated 1975 Quinlan case and the 1990 Cruzan case have established a "substituted judgment" model, using clear and convincing evident to find out what the patient would have wanted to do. The British court, nevertheless, took a different "best interest" approach, stressing what is in the best interests now of the incompetent patient. In both countries, the trend is to encourage advance death planning by some forms of "advance directives", such as "living will" and "health care proxies".

The picture is quite different in Taiwan. The notions of "patient autonomy", "self-determination" are foreign concepts. The predominant model of health care decision making is medical paternalism, in which doctors order and patients obey. Under the strong advocacy of patient right groups in recent years, more and more people start to realize the importance of informed consent and assert their rights in participating in clinical decision making. Nonetheless, when the decision involves death and dying, the biggest obstacle against self-determination come from family paternalism.

3. Family Paternalism in Taiwan

Family members play a very important role in health care in Taiwan. As a matter of fact, families are the major bedside caretakers for patients including those who are hospitalized. All hospitals in Taiwan, for instance, provide free army beds for patient families to borrow so that they can stay overnight by the bedside caring the patients. Moreover, families are usually the decision makers in critical moments. In Article 46 of the Medical Practice Act enacted in 1986, it says:

Before conducting a surgery, the hospital should obtain a consent form signed by the patient, the patient's couple, the patient's families, or whoever with an interest with the patient.

Though article 46 sets a clear hierarchical order that patient goes first, the clinical practice does not follow the rule. More than 90% of surgical consent forms were signed by the families, regardless the patient is competent or not. The Department of Health in Taiwan then added a footnote in its second version of the "Model Surgery Consent Form", stating that families are qualified signers only when the patient is incompetent or unable to sign. It does not, however, change the practice. When I was admitted to one of the most prestigious medical centers in Taiwan in 1999 for a C-section to deliver my daughter, I signed the consent form before the nurse could stop me in time. She then explained to me that it was the practice of the obstetric department that the document was for my husband, instead of me the patient, to sign and she ordered me to delete my signature.

In clinical reality, patient families are given more attentions than the patient herself because of their disputer status. If something goes wrong, it is the patient's families that will bring a lawsuit, therefore, physicians in Taiwan hardly dispute with patient families. In the particular subject of life-or-death decision making, patients are blocked out from the very first beginning. It is common that patient families ask or even beg physicians to withhold "bad news", mostly the diagnosis of cancer, from the patient. Believing that devastating news will defeat the patient's will to fight against the underlying disease, patient families usually screen medical information for the patient. If a patient does not even know what in fact he gets, physicians often ask, how can a valid informed consent be obtain?

Paternalism is the predominant ethics governing a variety of spheres of Taiwanese' lives, from education to health care, from politics to family matters, from life to death. In general, what governs the doctor-patient relationship in Taiwan is physician-centered medical paternalism that doctor decides. In end-of-life decision making, however, what governs is family paternalism. When everyone is in agreement, it is quite common for the doctors simply to withdraw artificial life-supporting treatment and let the patient die naturally. When an agreement cannot be reached between the physicians and the families, the families can sign an AAD (against the advice discharge) Form and take the patient home. But what if the families request for treatment against the patient's expressive wishes? What if there are conflicting opinions among family members? What is the limitation of the practice of family paternalism in making an end-of-life decision?

2. Limitations of Family Paternalism in making a final decision

Almost everyone in Taiwan over 30 have heard of Wang Hsiao-min and known her miserable story, but none except her mother has voiced out for changes. Wang's father insisted until his death on keeping her "alive", but her mother believed that Wang's condition was "worse than death". In order to overrule her husband's decision, Wang's mother had to resort to a higher authority - the state - for solution. The legal system in Taiwan is a civil law system that the court does not have a power to issue orders like their companions in the common law system. Wang Hsiao-min's mother filed petitions to the related government agencies including the president, which aroused widespread sympathy but no actual response. People donated money to the Wangs; it is urged that the government should establish more nursing homes and social supports; no one, however, touch the core issue that what Wang Hsiao-min would want to be if she is conscious, or what is in her best interest: to live or to die.

Under the culture of family paternalism, what the patient wishes for is not an issue to consider for it is presumed that the families would decide for the patient's best interests. Do families always know what is best for the patient? Are families capable of making a "good" life-death decision for the patient? I am not going to discuss those families who have conflicting interests with the patient. The following discussion focuses on those family members who love the patient dearly and try everything to make a good decision. Even in this situation, I argued, families often fail to make a "good" life-or-death decision.

It is never easy to make a life-or-death decision, let alone to make it for your loved ones. Given the terminative nature of death, it is hardly talked or discussed among families about how, when, or in what situation one wants to die. There is an old Chinese saying: Yi Yu Chen Chen (一語成讖,Bad things arrive after you say them out). This is way life insurance is very difficult to sell in the Taiwanese market; this is way the family members would ask doctors not to reveal a diagnosis of a terminal disease; this is way most families do not know what the patient really wants when their life reach a point that the line between living and dying becomes blurred. Let's go back to Wang Hsiao-min's case, it is difficult for us to tell who suffers most: Wang Hsiao-min or her parents? Let alone the financial burden, it is a physically and emotionally draining task to take cares a person in a persistent vegetative state. PVS patient usually require round-the-clock monitoring. They require 24-hour nursing (in case an airway became clogged, leading to suffocation), expectorants and anti-convulsive drugs, changes of urinary catheters and the tubes removing fecal waste, flexing of their muscles to prevent contractions, washing the body, brushing the teeth, treating dental cavities to prevent lethal mouth infections, and treating other infections with antibiotics. For as long as 35 years, Wang's parents took care of her in home, seeing her withering day by day, with no hope of recovery. What made Wang's father disagree with his wife on letting their daughter die when she had been lying on bed for 19 years?

Is Wang's father a firm believer in the old Chinese saying: Hau Sh Bu Ru Lai Huo (好死不如ョ活─"Bad living is better than a good death")? Probably, but I don't think this is the only reason. Does the religion of Wang's father prevent him from permitting his daughter to die? I have no way to know. I argue that under a family paternalistic culture, there is little room for Wang's father to make a decision that can make dying humane, end a torture for both patients and families. In a family paternalistic culture, making decisions for the patient is not only a right for families to assert, but also a duty to fulfill. Since people hardly discuss death in advance, families often do not know what the patient would want to do. Without a clear instruction from the patient herself, agreeing to or requesting withdraw of life-supports almost equates to abandonment, which is strongly against the family ethics. A 家長 is responsible to protect his families, to try his best to take care of them while they are unable to take care of themselves. Ironically, the more you love your family, the more you suffered from their miserable conditions, the less likely that you would agree to end the torture for it is your duty to suffer.

4. The Hospice Palliative Medicine Act of 2000

Wang Hsiao-min's story has shed the first shadow on the long existing creed "bad living is better than good death." Reports of the wakening of patients in a persistent vegetative state now and then, however, make the public reluctant to accept the idea of passive euthanasia, especially for PVS patients. But the abuse and misuse of family paternalism in death and dying have finally irritated conscientious physicians and nurses and led to the enactment of the "Hospice Palliative Medicine Act" (hereinafter "the Act"). The Act was proposed in 1997 and passed by the legislators on May 23, 2000. Though the Act contains only 15 articles, it is the first and only official statement on the subject of death and dying in Taiwan. According to the Act, a terminal patient has a right to choose hospice and palliative care and to refuse cardiopulmonary resuscitation (hereinafter CPR). Furthermore, the Act acknowledges the valid of advanced directives, including "living will" and "health care proxies."

4.1. Legislative background

The practice of family paternalism in Taiwan blocks a terminal patient from participating the decision making process from the very beginning. The motives of withholding information from patients may be good, but the result is often regretting. It is not unusual in clinical practice that families and terminal patients lie to each other, pretend nothing is going to happen, and miss the last chance to express their true feelings and wishes. Death and dying is a very personal matter, families are no more capable than patients in dealing with them. On the country, families, overwhelmed by sadness and sorrow, often become the biggest impediments from a peaceful dying. Despite respecting family paternalism, physicians and nurses are long troubled by the practice that patient families insist on futile CPR treatment that is not only pointless but also inhumane, and definitely not in the patient's best interest. For instance, a dying patient may be forced against his wishes to be kept "alive" by crude life-supporting machines so that one of the families living abroad may "catch the last sight" of him. Moreover, since the concept of "families" is broad, when there are conflicting opinions among family members, who has the final say? Avoiding unnecessary disputes, the physicians may be forced to comply with the most demanding family against his best judgment, against the wishes of other families, and against the dignity of the dying patient.[3]

The clinical practice of family paternalism in Taiwan is obviously against the modern movement of hospice and palliative care. Hospice and palliative care is a different approach to treat terminal patients .[4] The goals of hospice palliative care are "to provide relief from pain and other physical symptoms; to maximise the quality of life whilst neither hastening nor postponing death; to provide psychosocial and spiritual care; to provide supports to help the family during the patient's illness and bereavement." [5]

The concept of hospice can be traced back as early as 1842, but the modern application in clinics was a result from the efforts of Dame Cicely Saunders. Cicely Saunders[6] was trained as a nurse, a medical social worker and finally as physician. In 1967, She opened St. Christopher's Hospice in the south of London, England as the first academic hospice. It was a place where patients could go for relief of "total pain" with its physical, psychological, social and spiritual dimensions.

Miss Zhao Ke-Sh, a practicing nurse and an expert in medical ethics, first introduced hospice and palliative care into Taiwan in 1984. Miss Zhao founded the天主教康泰醫療教育基金會─Catholic Sanipax Socio-Medical Service and Education Foundation in 1984, endeavoring in the promotion of hospice and palliative care. The first Hospice Team was formed in Mackay Memorial Hospital in 1987, three years later; Mackay established the first hospice ward. Up to date, there are 20 hospitals providing 249 hospice beds and palliative care to terminal cancer patients.

More and more people in Taiwan accept the concept of hospice palliative care. There are currently five professional institutions[7] endeavoring in the promotion of hospice palliative care and education on death and dying. Under their strong campaign, the Department of Health started to draft a law in 1997 and the Hospice Palliative Medicine Act was finally enacted in 2000.

4.2. Promises of the Act

It is clearly stated in article 1 that the Act is promulgated for the purpose to "respect the medical preference of the incurable terminal patients and protect their rights and interests"[8] . According to the Act, "terminal patients" can choose "hospice palliative care" (art. 4)[9] , which by definition refers to "all palliative or supportive care given to terminal patients to alleviate or relieve their pain and discomfort, and No CPR" (art.3 (1))[10] . Such choice, however, has to be expressed in written forms and in compliance with the statutory procedural requirements (art. 4)[11] . The Act further acknowledges the validness of advance directives. It allows that anyone who is over twenty years old and with competent mind can express such wishes in a "living will", or to assign a "health care proxy" to make such decision for him if incapacitated .[12] As to those incompetent patients who do not have a valid document stating their wishes, the Act authorizes their "close families" a power to make a surrogated "No CPR" decision for them, but such decision cannot violate the terminal patient's expressive wishes while he was conscious (art.7)[13] . This is a big breakthrough to the family paternalism in Taiwan. The law for the first time makes it clear that it is the patient rather than their families the focus in death and dying. Families' decisions should not violate the patient's expressive wishes. Furthermore, to resolve the troubling situation in which patient families have conflicting decisions, the Act sets a clear hierarchical order in deciding who will be the appropriate surrogate decision-maker. According to article 7, section 3, priority is as followed: (1) spouse, (2) adult children, (3) parents, (4) siblings, (5) grand parents, (6) great grand parents, or immediate uncles and aunts, (7) parents in law.[14]

4.3. Pitfalls of the Act

Though the Hospice Palliative Medicine Act was hailed to be a big success in preserving human dignity in death and dying, it is doubtful what on earth the Act can achieve. First, the title of the Act represents a hazy attitude toward death and patient autonomy. It is rather awkward to have a law as "Hospice Palliative Medicine Act." Hospice medicine or palliative care is an established medical specialty in treating terminal patients. There is no need to enact a law to particularly regulate palliative care, since there is no ethic controversy involving in hospice medicine. What the interest groups originally proposed was "Natural Death Act" or "Death with Dignity Act", but neither name was adopted because the unlucky word "Death" should not be appeared in the title of a law. Since the main objective of the Act is to encourage advance death planning by acknowledging "living will" and "health care proxies", I suggested then using "Patient's Self- Determination Act", just like that in the United States. My suggestion was not taken because most persons involving in the legislating process, subconsciously influenced by the family paternalism, took a reserved view on patient autonomy. Not only the term "patient self-determination" cannot be shown in the title, a blunter phrase "medical preference" was deliberately chosen to replace the phase "self-determination" in article one, which reads as: "the Act is promulgated for the purpose of respecting terminal patients' "medical preference".

Other than the awkward name, the incredibly narrow scope of the Act makes it almost useless in practice. On the one hand, the Act deals with only "hospice palliative medicine", including supportive and palliative cares (actions) and no CPR (inaction). What about the most controversial withhold or withdrawal of life-sustaining and life-supporting treatments? Do competent patients have rights to refuse such treatments? The silence of the Act is disappointing. As a matter of fact, in legislating the Act, several religious groups and hospice organizations made a public declaration against any kind of euthanasia. Careful review their claims, however, showed that what they actually opposed is "active euthanasia." Refuse or withdrawal of life-supporting treatment is in accordance with their concept of "natural death." Despite that there was no strong objection against patients' right to refuse life-supporting treatment, the legislators still chose to avoid the subjects of "passive euthanasia," "right to refuse treatment", "right to die". Again, the Act vividly exhibits the reluctance of Chinese culture to discuss death, choice, and choice in death.

Without touching the core issue of right to refuse life-supporting treatments, some requirements of the Act looks rather ludicrous. According to the Act, patients eligible for requesting a hospice palliative care have to be "terminal patients", who by definition refer to those "suffer from serious injuries or diseases and their conditions are diagnosed to be incurable with an evidence-based prognosis that death is inevitable in short time." (Art. 3)[15] According to this definition, very few patients are qualified to ask for hospice palliative care. Wang Hsiao-min, for instance, is not eligible because in her case death is not inevitable in short time. I would like to emphasize again that hospice and palliative care is an established medical practice treating dying patients. It is a "treatment" instead of "withhold of treatment"; what is the point to limit palliative cares only to the statutory "terminal patients"? What if a cancer patient who is in great pain but the prognosis is estimated to have a year of life expectancy, can he opt for palliative care? He wants to take the one year to visit friends, travel around, enjoy his life for the last time but he need supportive treatments from the Hospice Team and he wishes to receive effective pain-control to preserve his life quality. Can he ask for hospice and palliative care? Why not?

As discussed earlier, the biggest obstacle for Taiwanese patients to exercise their autonomy in death and dying is the total unawareness of their diagnosis from the very first beginning due to family paternalism. Unfortunately, the Hospice Palliative Medicine Act reinforces such practice in article 8. Word-for-word translation of article 8 is as such:

"Physicians, in performing hospice medicine or palliative care to terminal patients, should inform patients or their families of treatment plan, but if patients have expressive intention to know their diagnosis, physicians should informed the patients." [16]

Well, now the law tells all the physicians in Taiwan that only when the patient has an expressive wish to know his conditions, physicians are obliged to tell him the truth. The implication of article 8 is that withholding of information from the patient is the principle, and informing patients is exceptional only when patients clearly ask. By allowing patients be blocked from an informed decision making, the law sends a message confirming the popular myth that patient cannot take the information of terminal disease.

5. Conclusion

Taiwanese legislature passed the Hospice Palliative Medicine Act in 2000, the first and only official document dealing with death and dying. Though the Act is a response to the abuse and misuse of family paternalism in end-of-life decision making, a careful review shows that the Act represents a long ambiguous attitude of Taiwan society toward death and dying, a hesitation to accept patient self-determination, and a compromise to the practice of "family paternalism". If the society cannot discuss death and dying with a more open and honest attitude, if the people are not encouraged to make an autonomous decision, family paternalism can only bring sorrow and regret for both patients and families. What the Act can achieve is inevitably limited.

Death is never a pleasant subject to discuss in whatever culture. Making a life-death decision is always difficult even in the most liberal country such as Dutch where the long-tolerated practice of physician-assisted suicide has finally been promulgated into law in the November of 2000. There has been a long period of time in human history that the sanctity of life is absolute. But the advancement of modern medicine and technologies, which offers us an increasing array of therapeutics and apparatuses that can effectively sustain biologic existence, but often cannot work cures or even reprieves from underlying illnesses, has lead to a transition that values not only the length but also the quality of life. It is very unwise for an aging or aged society not to discuss death and dying. The more we are afraid of talking about death and dying, the more sorrows and regrets death will bring about. On the country, the more we prepared death and dying in advance, the more peace and dignity we can get.

No matter how well prepared, it is never easy to make a life-death decision. It is even more difficult to make such decision for the loved ones whom are incompetent. Family paternalism in Taiwan endows the family with overriding legal prerogative in health care decision making, but in the particular issue of death and dying, families are not necessary the best surrogacy, it is time for us to re-consider the legitimacy of this delegation of authority. Moreover, the justification for designating the family as the lay arbiter of choice is unclear. It may be argued that only family members of the patient can judge patient preferences with coherence. It is presumed that families are most likely to share the values and beliefs of the patient. In reality, however, families are not always cohesive, and the preferences of a patient might more strongly align with those of a close friend or partner.

No method short of telepathy can determine the wishes of a patient. Neither a discussion about the end-of-life or even a formally authored advance directive can accurately predict the state of mind of a patient facing incapacitation. End-of-life decisions are difficult in and of themselves and more so when made by another party. No surrogate, however, can ever perfectly represent a patient, and substituted judgment, even when the patient has selected a surrogate. In this light, it is questionable to assign moral authority to the family as the appropriate surrogate in all cases. Not only have studies shown families to be inaccurate in guessing patient wishes, but also patients and surrogates alike concede considerable decision-making authority to physicians anyway .[17]

Family paternalism may be more desirable than medical paternalism in life-or-death decision making. But no one is better than patient himself to make such a fundamental decision. While it is indeed impossible to eliminate the personal preferences and values of a physician from the decision-making process, it is also impossible to impart adequately to emotionally-overwrought family members the medical knowledge and experience needed to judge the situation. The physician plays a crucial role in the therapeutic process, families plays a critical role in care-taking, but to live or to die, let it be a decision for the patient, and by the patient.

[1] She clearly reused to be put in an endotrahea tube and a ventilator.

[2] A charitable institution has offered to adopt Wang Hsiao-min. It is believed that, with all the publicity she has received, she will get the care she needs.

[3] Situations like this are also common in the United States, some authors have dubbed it Daughter from California Syndrome; wherein a distant son or daughter swoops into the medical decision making process with such denial, guilt, and anger that he or she seeks to override the decision to withdraw life support made by the patient and/or a sibling-surrogate. see Molloy DW, Clarnette RM, Braun EA, Eisemann MR, and B Shneiderman, Decision-making in the incompetent elderly: the Daughter from California Syndrome.? The American Geriatrics Society 39(4): 396-399 (1991)

[4] Hospice palliative care is "the care of patients with active, progressive, far-advanced disease and a short life expectancy, for whom the focus of care is the relief and prevention of suffering and the quality of life." See, visited on 2002/11/5

[5] ibid.

[6] Dame Cicely Saunders was trained as a nurse, a medical social worker and finally as a physician. Since 1948 she has been involved with the care of patients with terminal illness, has lectured widely on this subject and written many articles and edited several books. She founded St. Christopher's Hospice as the first research and teaching hospice linked with clinical care in 1967. This has been a pioneer in the field of palliative medicine and has links with those developing such work around the world. She holds the prestigious Order of Merit as well as many honorary degrees, and is the 1981 recipient of the Templeton Prize for Progress in Religion. Through the education and research mission of St. Christopher's, Dame Cicely Saunders is credited with founding the modern hospice movement. See, visited on 2002/11/6

[7] These are (1) 財團法人天主教康泰醫療教育基金會(Catholic Sanipax Socio-Medical Service & Education Foundation), founded in 1984;; (2) 中華民國安寧照護基金會(Hospice Foundation of Taiwan), founded in 1990; (3) 佛教蓮花臨終關懷基金會(Buddhist Lotus Hospice Care Foundation), founded in 1994; (4)台灣安寧照護協會 (Taiwan Hospice Organization), found in 1999; (5)台灣安寧緩和醫學學會(Taiwan Hospice Palliative Care Academy), founded 1999

[8] 第一條 (立法目的)為尊重不可治癒末期病人之醫療意願及保障其權益,特制定本條例;本條例未規定者,適用其他有關法律之規定。


[10] 第三條 本條例專用名詞定義如下:
一、 安寧緩和醫療:指為減輕或免除末期病人之痛苦,施予緩解性、支持性之醫療照護,或不施行心肺復甦術。


[12] 第五條 (意願書之要件)



[15] 第三條 (名詞定義)

[16] 第八條

[17] See Johnson MF, Lin M, Mangalik S, Murphy DJ, and AM Kramer. Patients perceptions of physicians recommendations for comfort care differ by age and gender. Journal of General Internal Medicine 15(4): 248-255.(2000)

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