— Thoughts on the Concept and Boundary of “Death with Dignity”

 

 

Abstract: Death with dignity is the embodiment of the dignity of human life in the context of end-of-life medical care. However, in the development of its concept, it has been alienated into a single way of death and is often confused with the concept of euthanasia.It is therefore a theoretical and practical necessity to re-expand the connotations of death with dignity Death with dignity is the subjective value of dignity reflected in the context of dying. It takes equality, freedom, and virtue as the core, and uses the right to life as its external support. It is projected onto the medical context and incorporates the patient’s right to informed consent. Subject to public interest, legal paternalism, and the principles of public order and good customs, the boundary of the right to death with dignity should be between active treatment and natural death, and active euthanasia in the form of giving up the right to life should not be included in the right to death with dignity.

 

Keywords: terminal medical care · death with dignity · right to life with dignity · right to informed consent

 

Death has gradually gone from being a subject for purely philosophical inquiry to being a powerful human rights movement calling for legal guarantees to protect the right to a death with dignity. This is separate from issues surrounding the death penalty. It refers to the passing of laws to protect a person’s right to die with dignity. In light of modern terminal medical care, it is time for this right to be defined by law rather than ethics or morality so that every citizen can seek essential protection for their right to a death with dignity. The word “dignity” was first codified into Section 1002 Right to Life in the Civil Code of the People’s Republic of China, enacted in 2020. The sentence that “the life and dignity of natural persons are protected by law” has become a highlight in the section on personality rights. In the context of terminal medical care, where the right to live with dignity is most frequently discussed, the right to live with dignity often includes the right to die with dignity. Although many studies about dying with dignity have been done, there is little jurisprudential explanation on this as a fundamental human right. In addition, it seems that death with dignity is often interpreted by default as “stopping life support measures”, and it is easy to be confused with euthanasia, which not only leads to the alienation of the concept of death with dignity but also hinders the development of China’s legal protection of the right to life with dignity.¹ Therefore, this paper attempts to outline the evolution of the concept of death with dignity, explore the human rights jurisprudence behind it and point out the boundary of the right within the current social context. It is hoped that this essay can be part of a better theoretical foundation that can contribute to the development of Chinese terminal medical care and the protection of the right to a life with dignity for people.

 

 

Most of the current studies of death with dignity in China begin with the Karen Quinlan case in the United States in 1977. Karen Quinlan was 20 years old. She slipped into a coma while partying at a bar. She was subsequently diagnosed as being in a persistent vegetative state and a ventilator had to be used to help her breathe. Life support measures such as nasogastric intubation and a urinary catheter were also necessary. After three months of treatment, Karen’s parents requested that she be disconnected from her ventilator and other life-support devices because they did not want their daughter being tortured by medical devices. However, their request was opposed by the hospital and the doctors. Karen’s parents then filed a law suit in the local court, asking the court to declare that they had the right to remove the life-support measures for Karen so that she could die with dignity, which she deserved. The court granted their request after the second instance.²

 

The expression of “death with dignity” was introduced into China via a Japanese scholar.³ After that, most Chinese scholars adopted this expression. However, due to the influence of the case itself and the notion of euthanasia, when defining death with dignity, both Japanese and Chinese scholars define it as a way of dying, as in the Karen Quinlan case. For example, both Zhang Mingkai and Japanese scholar Kai Katsunori define death with dignity as removing life-support measures for patients who are in a vegetative state. “Death with dignity means to remove the life-support devices for patients in a persistent vegetative state, to stop pointless, unnecessary lifeprolonging measures and to allow the patients to die naturally.”⁴ Wang Yue and Ye Li believe that there is a possibility that patients in a vegetative state will wake up and recover, so they adopted a double restriction: Death with dignity was defined as removing life-support measures from vegetative patients who are in an irreversible unconscious state and are at the end of life.⁵ Jianli Liu, Yasuyuki Suemichi, and many other scholars believe that death with dignity refers to removing life-support measures from all terminally-ill patients.⁶ Although there are disagreements in the functional objects of this concept, death with dignity is always defined as a way of “refusing or withdrawing life-support measures,”⁷ which also makes this concept easily confused with the concept of “passive euthanasia,” which means allowing patients to die without intervention.

 

Since death with dignity is defined as refusing life-support measures, the phrase “death with dignity” is challenged and criticized by many scholars. These scholars, such as Suli Sui and Yaming Li, say that dignity is supreme in human rights. In terms of emotions, dignity outweighs other concepts such as belief, economy, and aesthetics. If death with dignity is defined as refusing life-support measures, people cannot deny it morally.⁸ It even implies that refusing to choose death with dignity means the loss of the dignity of death.⁹ This point of view is powerful in terms of dismissing the notion of death with dignity. However, by analyzing the nature of this problem, it can be found that the root of it is not dignity being associated with death, but misunderstanding death with dignity as a method of death where life-support measures are refused. In other words, the cause of the problem lies not in the term but in the misunderstanding of its nature. The current understanding of death with dignity is close to copying the facts of the Quinlan case. That the court supported ending life-support for Karen Quinlan to protect her dignity in death does not mean that the only way to gain the dignity of death for terminal patients is by removing life-support measures.

 

The essence of death with dignity is a right to a life with dignity. Its core value is respect for an individual’s subjectivity, which is shown by the right to make decisions by themselves to a certain extent. In 1968, Dr. Walter Sackett, an American doctor, proposed a bill related to death with dignity, advocating choosing the terminal situation with dignity, allowing patients suffering from diseases that cannot be cured to decide for themselves whether to have life-support.¹⁰ Although the bill was not passed, an open and inclusive concept of death with dignity was proposed by Dr.Sackett, where dignity is the goal of death, and patients, the subjects, can make their own decisions about how they wish to pass away. Removing life-support measures is just one means of death with dignity. It was recorded in the second trial of the Karen Quinlan case that patients and their families are appointed with full power to make decisions concerning the identity of the treating physicians. The patients have the right to stop or refuse extraordinary medical procedures based on their own decisions, either explicit or implicit, which shall be without any civil or criminal liability. It will not harm society’s respect for the life of the patients.¹¹ It can be seen that the reason that the court supported Karen’s parents should be interpreted as respect for Karen’s choice of her state of life with the proof given by Karen’s parents instead of regarding the discontinuance of the life-support apparatus as an objective criterion of gaining dignity. It is essentially respect for individuals’ rights instead of an objective standard.

 

What has caused the concept of death with dignity to become alienated into refusing life-support measures? In addition to the misunderstanding and misinterpretation of the report on the Karen Quinlan case, euthanasia, another concept related to death has also played a role. In Black’s Law Dictionary, the term “euthanasia” is defined as “the act or practice of painlessly putting to death persons suffering from incurable and distressing disease as an act of mercy.”¹² As a concept born earlier and more widely spread than a dignified death, the definition of euthanasia also keeps changing in its attempts at legalization. It has gradually developed a series of sub-concepts, including voluntary euthanasia, involuntary euthanasia, active and passive euthanasia, etc. The dying methods define these concepts. For example, voluntary euthanasia and involuntary euthanasia are divided by whether the patient voluntarily proposed to be euthanized by themselves; active and passive euthanasia is decided by whether something that causes the patient to die is deliberately made. In short, the definitions of euthanasia’s sub-concepts are also confined to the means for dying. After the concept of death with dignity being introduced into China as a new concept, many scholars tried to define it based on the model of euthanasia’s definition due to the similarity of the two concepts. Therefore, the meaning of “death with dignity” became a way of dying where life-support measures are refused such as in the Karen Quinlan case. This also leads to confusion between death with dignity and euthanasia, putting death with dignity in an awkward position as being a variation of euthanasia. Therefore, this paper argues that the concept of death with dignity should return to its original meaning, which is “death with dignity is a form of a good death, i.e., the terminal medical decision made by the individual according to the right to live with dignity, based on a subjectivity value judgment, in pursuit of the dignity of life.” Therefore, removing life-support measures cannot be directly equated with death with dignity. It is nothing but one form of death with dignity and therefore cannot serve as a catch-all definition of death with dignity. Legislative boundaries should be set to provide choices for individuals to make their own choice within the limits based on the right to a life with dignity. Only by doing so can the dignity of life in the terminal stage of life be truly protected.

 

In addition, besides euthanasia, the concepts born of a death with dignity also include a living will (advance medical directive), hospice care (palliative care), etc. A living will requesting a death with dignity is the means to that end. A living will refers to the statement a person makes in advance to refuse a specific type of treatment or to sustain their life in a certain way when they are lucid and which is witnessed by impartial obsrvers. It allows individuals’ wishes about their terminal medical care to be fully expressed and followed even when they are unable to communicate on their own. In many cases, the system of death with dignity and living will refer to each other. Hospice care or palliative care, as an emerging part of the medical system, reflects the practical need for death with dignity. It focuses on caring for the medical needs of terminal patients, meaning providing medical and humanistic care for terminal patients or elderly patients in terminal stages in terms of their physical, psychological needs. Its ultimate purpose is not curing, but reducing pain and discomfort, enhancing the quality of life in the terminal stage, helping patients die with dignity, in peace and comfort. 

 

 

When death with dignity is defined as the terminal medical decision made by individuals based on their feelings about protecting the dignity of life, how should the dignity of individuals be interpreted? It is undeniable that dignity is a vague concept and its core values change over time. Therefore, people may feel confused when dealing with it in the context of death. The goal of this paper is not to define dignity. The paper extracts the shared values of dignity from the works of scholars at different times that are valuable today, puts them in the context of death in modern society to further explain the practical need for death with dignity.

 

 

Tracing the realistic origin of human dignity, it can be learned that it was born in ancient Greek civilization, developed by Stoicism, and started to transform from “the hierarchical dignity following religious theology” to “a virtue-related view of dignity in the context of humanism” during the Renaissance. During the Enlightenment in modern Europe, it was enriched and developed systematically. Gradually, it developed into three core values, namely equality, freedom, and virtue.

 

According to the extant records of ancient Greece, the word “dignity” was not directly used. Most of the studies about the view of dignity at that time focus on tracing the common value shared by the ancient Greek philosophers’ thinking and the later theory of dignity.¹³ In the history of Western Civilization, the word “dignity” was first used by the Stoics. In Marcus Tullius Cicero’s De Officiis (On Obligations), it appears seven times, among which in is used in relation to countries twice, and to humans five times. Cicero believed that the dignity of individuals depended on equality, and the primary commitment for rulers should be establishing a system of equality, which allows people of different social statuses to have the same rights. In addition, Cicero believed that dignity depends on virtue, which means fulfilling one’s duties. “What is honorable in life lies in the fulfillment of duties and what is disgraceful in life lies in the ignorance of duties.” “As long as a certain measure and order of life are kept, virtue and dignity can be preserved.”¹⁴ Arguably, the Stoics proposed the notion of equality and related dignity with virtue, which can be seen as the foundation of the Western view of dignity. Even though it was influenced by the sense of hierarchy caused by its city-state system, there is no doubt that it laid a preliminary foundation for the liberation of human nature.¹⁵

 

Medieval Christianity’s view of dignity can be seen as a regressive step to a certain extent because what was established was a sense of hierarchy in the context of religion. People were divided according to the level of “sin” or “completeness,” and the church was endowed with the privilege to intervene in the criminal punishment system in the name of God. Consequently, obedience became part of human nature.¹⁶ Religious theology placed God’s dignity before human dignity. Man depended on God, and individuals’ subjectivity was inferior to the authority of God. Under the banner of the belief in the equality of everyone in front of God, such equality was in the lowest form as people were restrained by power and hierarchy under the cloak of the so-called equality.¹⁷ As Marx said, “in the Middle Ages, every form of right, freedom and social existence was expressed as a privilege.”¹⁸

 

In the Renaissance, many philosophers who focused on the emancipation of humanity and the freedom of human beings emerged, among whom Giovanni Pico della Mirandola played the most important role in the development of human dignity. He believed that dignity means the realization of the human nature of freedom. In the tone of God, he said, “We have given you, O Adam, no visage proper to yourself, nor endowment properly your own… We have made you a creature neither of heaven nor earth, neither mortal nor immortal, so that you may, as the free and proud shaper of your own being, fashion yourself in the form you may prefer.”¹⁹ Although Pico was prevented from giving his Oration, it expressed freedom as part of human nature in a profound way, allowed human dignity to be liberated from the chains of hierarchy amid the religious background, and built the bridge between freedom and dignity for humans. 

 

During the Age of Enlightenment, another anti-feudal, anti-church ideological emancipation movement after the Renaissance, the theories of dignity witnessed a systematic integration and development. Kant’s theory was the most important. It was based on the virtue-related view of dignity which was similar to the thoughts of the Stoics. Kant believed that “morality, and humanity (Menschheit), so far as it is capable of morality, are the only things that have dignity.” He regarded dignity as human’s absolute and intrinsic value, which depends on man’s subjectivity, relies on the restriction of morality and virtue, and is realized by self-discipline as a result of free will. Kant’s contribution is more than what his mentioned above. He combines the dignity of morality (duty) with the dignity of right. He believes that Moral imperative is a proposition that requires obligation, from which the power to make others bear obligations is derived, that is, the concept of legal right.²⁰ Kant views right as an external condition to realize dignity. To Kant, man’s dignity builds on the free will of man, the subject. The right, as an external power, is the condition of coordinating individuals’ free will and the freedom of others, which allows individuals’ dignity to be realized in social interactions.

 

Since World War II, the word “dignity” has been included in major human-rights conventions and the constitutions of various countries. In addition, it started to be closely linked with human rights. Right-oriented theories gradually gave way to modern human rights theories, for example, Qu Xiangfei believes that man’s dignity is the foundation and goal of the protection of human rights in modern times. Therefore, man’s basic rights can be seen as the foundation of man’s dignity. All men are created equal with dignity, so any violation of human rights is a violation of human dignity.²¹

 

From a historical perspective, human dignity developed in the battle between human rights and political and theocratic power. Its essence is a value of subjectivity, and it has gradually absorbed equality, freedom, and morality as its core. Right serves as an external condition for it. Thus, a value system that includes philosophical speculation, ethical evaluation, and legal norms has been gradually established.

 

 

Putting the value system mentioned above into modern medical context and exploring what is the dignity needed by terminal patients, the core of dignity, namely, quality, freedom and morality will offer three basic propositions: first, terminal patients should have an equal status regarding subjectivity as others; second, terminal patients should have the right to choose their medical plans; third, as long as the choices made by terminal patients are not morally wrong, they should be respected by others and the wider society. However, it is hard for these propositions to be realized in reality and often the patients’ dignity of death is not protected properly. 

 

First, terminal patients’ capacity for civil conduct is often restricted. They may be unable to look after themselves because of age or suffer from disturbance of consciousness due to accidents or diseases or losing their capability to express themselves even though they are conscious. All the above conditions limit the patient’s ability to express themselves, so it is difficult for them to express their terminal medical decisions to their families and doctors. Therefore, although terminal patients, as civil subjects, have equal civil rights as others, are often seen as people who do not have full capacity for civil conduct. As a result, the civil agent system is frequently adopted where the families of the patients make the decisions instead. 

 

In addition, the decision-making model influenced by the protective medical notification method and familism further deprives patients of the right to make decisions on terminal medical plans. Unlike Western individualism, in traditional Chinese culture, patients’ families play an important role in making big medical decisions. If there is information that is considered to be unfavorable to a patient, medical workers usually inform patients’ families first instead of patients themselves, which is seen as a kind of protection. As a result, before the patients lose their capacity for civil conduct, they would have lost the opportunity to know their condition due to protective medical notification methods and familism. Consequently, they are deprived of their right to make their own decisions. However, as Wang Yunling has pointed out, individualism or familism is a question of culture instead of morality.²²As Chinese family structures, lifestyles and values are changing, pure individualism or familism no longer exists. Therefore, sticking to the protective medical notification method and deriving patients of the right to know their conditions and participate in making their own medical decisions can lead to the deprivation of patients’ autonomy and subjectivity. As a result, patients’ dignity is weakened.

 

Finally, the conflicts in the patient-physician relationship exacerbate this phenomenon. Information asymmetry is often seen in medical services. The gap between patients’ high expectations and what medical technology can do often leads to doctor-patient disputes or even violence against doctors. In terminal contexts, patients’ families are facing great sadness over the death of their loved ones and conflicts are easier to happen. As a result, doctors are often extremely cautious when providing terminal medical services. To avoid doctor-patient disputes, doctors are very much concerned about the opinions of patients’ families, which leads to the neglect of the real needs of patients. Consequently, sad situations depicted by Diandian Luo such as “keep applying CPR until patients’ families stop the doctors”, “patients beg doctors to stop but doctors cannot” have happened. The feelings of the people who suffer from diseases, which are supposed to be the focus of medical services are weakened and ignored. Therefore, the dignity of death, as a kind of subjective value, is undermined further.

 

As the gap between the value that is pursued and the actual situations have widened, the movement for death with dignity has grown, with people calling for legislation, which is backed by the coercive power of the state, to solve this practical problem by providing opportunities for terminal patients to express their terminal medical decisions in advance (living will or advance directives). By doing so, the right to make medical decisions will not be weakened by protective medical treatment, familism, and lack of opportunities to make decisions. Thus, the subjectivity of patients can be protected and it becomes easier for doctors to help terminal patients. Medical services can then focus more on caring for the patients. 

 

 

When a law is involved in the issue of death with dignity, the right to death with dignity needs to be confirmed. Many rights are related to death with dignity, such as the right to life, freedom, personal dignity, and informed consent, etc. The author believes that the fundamental right of death with dignity is the right to life, especially the right to dignity in the right to life. No matter how the medical treatment idea changes, the essence of medical care should always be centered around human life, including life expectancy and the quality of life. That includes terminal medical care. The right to life with dignity is the embodiment of general personality rights such as the right to freedom and the right to personal dignity in the right to life. The rights to informed consent, medical autonomy, refusing medical treatment, etc. can be viewed as the embodiment of the right to life with dignity in relation to more specific medical conditions. These rights, as part of the right to life, are the fundamental right to derivative rights. Therefore, this paper will discuss the right to life as the basis of the right to die with dignity.

 

 

Life is the how all creatures exist, and it is the result of an accidental gathering of various natural factors. Gradually, various creatures came into being, including humans. Life is defined from different perspectives in different subjects, but what is undeniable is that life is first and foremost a natural phenomenon, which is true not only for humans but also plants and animals. Even after the evolution of homo sapiens, life was embodied as a natural attribute. As a creature, human beings are nothing but part of the biosphere where the rule of natural selection, survival of the fittest applies.²³ During human evolution, human beings with wisdom and rationality began to live in groups and form a stable social structure. It was not until then that human social attributes rose. When life is applied to human beings, it refers to the objective facts of a person’s birth, growth, and death in society.²⁴

 

In ancient Greece, the pioneers of natural law began to regard life as an absolute natural right and thus they called it a “natural right”. As a natural right, the right of life depends on the adjustment or protection of natural law in the natural state. As John Locke says, “But though this be a state of liberty, yet it is not a state of license: though man in that state have uncontrollable liberty to dispose of his person or possessions, yet he has not liberty to destroy himself, or so much as any creature in his possession…The state of nature has a law of nature to govern it, which obliges everyone: and reason, which is that law, teaches all mankind, who will but consult it, that being all equal and independent, no one ought to harm another in his life, health, liberty, or possessions”²⁵ However, this protection is fragile. As natural law can only be understood by people with reason, there is neither law to restrict the “barbarian” in the natural state nor a referee who has the right to punish irrational acts in accordance with the law. Therefore, people made “social contracts” and alienated part of their natural rights to form governments. Thus, public power and law were created and the right to life has also become a legal right listed in the social contract that should be protected by the power of the state. 

 

 

The right to life, in modern times, has been widely enshrined in national constitutions and international human rights conventions, first in the United States Declaration of Independence of 1789, which states, “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” Afterwards, the right to life was been enshrined in the supreme laws in many countries, represented by the Basic Law for the Federal Republic of Germany and the Constitution of Japan, as well as in the main international human rights conventions, represented by the Universal Declaration of Human Rights and the International Covenant on Civil and Political Rights (ICCPR). Then, based on these, personality rights in civil laws have developed, with the law of passing off as the main protective measure. Furthermore, when we look at the details of the specific codes regarding the right to life in these documents, it can be concluded that they are both declarative and defensive. Also, the connotation of the right to life is mainly concentrated on life safety. From the perspective of the nation, it is stressed that public authorities have no right to interfere with citizens’ right to life and should actively protect their right to life from being violated. From the perspective of the individual, it is emphasized that no one should be allowed to infringe on the lives of others and that any citizens have the right to defend themselves from any unlawful act that violates their right to life and ask for public protection if necessary. 

 

With more and more advanced research into the right to life, scholars have gradually moved from studies of the passive defense of the right to life to studies of the active use of life benefits.²⁶ Some scholars claim that a natural person, as a subject of the right to life, should be guaranteed not only a set of basic and defensive rights including maintenance of life and securing life safety but also the right to control one’s life regarding choosing the state of one’s life.²⁷ This proposition has provoked many discussions among scholars. Of course, there are many opposing voices, including: first, if the interests of life are at the disposal of oneself, then it will be concluded that individuals have the right to commit suicide. The act of suicide, however, is not supposed to be regulated by religions, ethics, and morality rather than any laws. Therefore, the right to dispose of the interests of one’s life should not be regulated by any law either.²⁸ Second, the terms including “dispose of” and “use of” are mostly used for items. By contrast, emphasizing the disposability or usability of life is to reduce a human being to an object, which is the objectification of human beings and undermines a person’s dignity as a result.²⁹ Third, the social nature of life is against a person’s control of their own life, especially the act of giving up on life. The individual, as a member of society, is supposed to shoulder social responsibilities. The abandonment of life, however, is not only a disregard for one’s social responsibilities as a member of the social community but also an irresponsible behavior toward other citizens.³⁰ Therefore, the right to dispose of the interests of one’s life has been questioned and is often regarded as committing suicide or euthanasia. 

 

 

In China, it was not until the formulation of the Civil Code of the People’s Republic of China that the argument about the usability of personality rights was brought up again. With the advancement of modern medical technology and biotechnology, the usability of personality rights is reflected not only in the right to life. The separability and disposability of some personality interests, including organs, sperm, eggs, and genetic information, which are attached to human beings become more and more obvious. The disposal and use of personality interests at the factual level, therefore, have become more common.³¹ The traditional dichotomy of subject and object in civil codes is on its way out. In addition, the “negative defense of personality rights” cannot meet the needs of social development. As a result, the optimistic attributes of the right to value have begun to be prized and reconstructed; the human rights which value freedom and are inherent to the right to dispose of one’s life interests have begun to be absorbed by the dignity of life; the limited right to dispose of one’s life interests based on the dignity of life has begun to be generally supported by the academic community.

 

The limited right to dispose of one’s life is supported by the following: first, the right to dispose of one’s life is never an argument that is “all or nothing.” The acknowledgment of life interests’ disposability and availability does not mean that individuals can abuse their life without any limitations. Regarding where the right to dispose of one’s life interests can be applied, the fundamental principle of “legislation first” must be strictly adhered to. As Professor Wang Liming points out, an important characteristic of personality rights is their statutory nature. Only through legislation, the exercise and use of personality rights including the right to life can be justified.³²Therefore, actions that bring life to an end including committing suicide and active euthanasia, without being acknowledged by laws, cannot fall within the scope of the right to dispose of one’s life interests. Second, the understanding about how to dispose of one’s life interests should not be inferred from an individuals’ domination over things in civil laws. That is because that to dispose of one’s life is not to degrade one’s dignity by objectifying oneself, but rather to achieve one’s dignity to better exercise one’s subject values and to prevent oneself from being dominated by others as to degrade one’s subject status at certain times, such as at the end of one’s life. Professor Yang Lixin also points out that the recognition of the limited right to dispose of one’s life interests can make people’s life more complete.³³ Finally, the social nature of individuals cannot replace their subjectivity. A reasonable reconciliation, however, is required between them. What we need, therefore, is neither absolute deny nor free abuse. It is necessary to set the limitations for how one can dispose of their life interests and safeguard individuals’ subject values without violating the social nature of human beings. Along with the establishment of the Personality Rights section of the Civil Code of the People’s Republic of China, the dignity of life has been recognized and protected by legislation. In terms of the protection of the right to life in China, it has grown from the passive protection of life safety to the active protection of life dignity. As a result, the appropriate right to dispose of one’s life interests based on safeguarding the life dignity of patients at the end of life requires further research and reasoning.

 

 

Although in terms of the interrelationship among rights, the right to informed consent is a right derived from fundamental human rights, including the right to life and the right to health within medical contexts, it has been ignored for quite a long time. In early times when paternalism dominated the medical contexts, doctors held absolute authority. People only regarded medicine as a method to protect their right to life but seldom realized that medical error could occur, thus violating the right to life and that a more specific right was required to regulate doctors. The 1767 case of Slater v. Baker & Stapelton focused on that. When the doctors involved were sued for not informing the patient of his health conditions, they argued that no law or judicial precedent was mentioning that doctors should tell patients anything before obtaining their consent.³⁴ Subsequently, there were several cases in the United States in which the reason “lack of consent before surgery” was cited for prosecution, such as the 1905 Pratt v. Davis case³⁵ and the 1914 Schloendorff v. The Society of New York Hospital case.³⁶ But it was much said and little done. Patients’ right to informed consent was never given enough attention to until after World War II when the Nuremberg trials brought to light the inhumane human experimentation carried out by Nazi doctors. After that people started to scrutinize the legitimacy of medical authority. The Nuremberg Code, published in 1946 began with “the voluntary consent of the human subject is essential”, which, although limited to human experimentation, undoubtedly laid the foundation for the extension of the informed consent to medical contexts. In the medical context, the term “informed consent” was first coined by the judges in the 1957 Salgo v. Leland Stanford Jr. University Board of Trustees case in the United States.³⁷ Different from the cases above, the doctors involved failed to inform the patient involved about the potential risks associated with the surgery, causing the patient’s paralysis. Although the doctors had obtained consent from the patient, the consent was flawed. The judges in this case, for the first time, analyzed duty of doctors to inform patients and placed it superior to patients’ tight to consent. As a result, the right to informed consent in its full sense has been formalized since then.

 

China’s first law on the right to informed consent can be traced back to the Regulations on the Administration of Medical Institutions (hereinafter referred to as RAMI) published by the State Council in 1994, which stipulated in Article 33 that “when offering surgery, special examination or special treatment, a medical institution shall obtain the consent of a patient and obtain the consent and signature of his or her family or person related.” In this way, patients’ right to consent can be achieved by formalizing obligations of medical professionals. This article, however, like the early US cases of Pratt v. Davis and the case Schloendorff v. The Society of New York Hospital emphasized agreement rather than consent. Also in 1994, the Ministry of Health of the People’s Republic of China published the Rules for the Implementation of the Regulations on the Administration of Medical Institutions (hereinafter referred to as RIRAMI) amended this article by confirming in Article 62 that “patients have the right to be informed about their conditions, diagnosis, and treatment” and stipulated that “medical institutions should provide their patients with necessary explanation when conducting operations, special examinations and special treatment”. Therefore, the content of it can complement RAMI, forming a more complete right to informed consent. Later, China published Law on Practicing Doctors of the People’s Republic of China and Regulations on the Handling of Medical Accidents, both of which mention provisions relating to doctors’ notification and obtaining patients’ consent, but they are less complete than the two regulations above. For instance, the Law on Practicing Doctors of the People’s Republic of China in the first part of Article 26 stipulates that doctors must inform patients but in the second part only stipulates that doctors shall get the approval from the hospital and the consent of the patient or family members before conducting clinical treatment on an experimental basis without mentioning other circumstances. The Regulations on the Handling of Medical Accidents stipulated in Article 11 that doctors must inform but no other duties to obtain patients’ consent. It was not until 2009 that the Tort Law of the People’s Republic of China set Liability for Medical Malpractice as a separate section and Article 55 reiterates that medical staff must inform patients and that written consent is required. In the Civil Code of the People’s Republic of China, the term “written consent” is amended to “explicit consent,” which advances patients’ right to informed consent from formalized protection to substantive protection. In general, the Civil Code has further formalized patients’ right to informed consent by clearly stipulating the obligations for medical staff, patients’ right to informed consent is a statutory right in the Civil Code.

 

In addition to the general provisions about the right of patients to informed consent in the laws and regulations above, other laws and regulations that regulate specific medical activities including the Law of the People’s Republic of China on Maternal and Infant Health Care, Regulations on Human Organ Transplantation and Mental Health Law of the People’s Republic of China also reiterate and set specific rules regarding patients’ right to informed consent. But unfortunately, up till now, there is still no specific law in China to regulate the right to informed consent of patients at the end of their life. Therefore, how to protect the rights of terminal patients can only be inferred from general laws and rules. However, as mentioned above, the subjective status of these patients is more vulnerable than usual, which leaves questions for doctors about when they should tell patients their true condition and when should they partially tell the truth. How can patients’ right to informed consent be protected when they cannot consent on their own and how can we avoid a paternalism mode of representation from depriving patients of their right to informed consent? Can patients in China who have signed a private version of a living will make sure their rights are recognized and safeguarded by the law in advance? All of these questions require a specific law. The medical profession in China has taken the lead in expressing its position on this issue. In 2014, the Code of Ethics for Chinese Doctors issued by the Chinese Medical Doctor Association states that “medical staff should respect the wishes put forward by incapacitated patients when they are not incompetent, and patients’ interests should be protected to the maximum by means including a living will or substitute consent.” China’s former National Health and Family Planning Commission also issued Guidelines for Hospice Care (for Trial Implementation) and the Basic Standards and Management Specifications for Hospice Care Centers (for Trial Implementation) in 2017. In Guidelines for Hospice Care (for Trial Implementation), it is written that “patients’ will in making decisions should be respected so they can maintain an optimistic attitude through the end of life, and they can pass away comfortably and with dignity.” It is clear that the state is gradually promoting the protection of patients’ dignity at the end of life but more detailed institutional arrangements are needed

 

 

 

From the above, it can be seen that the last part of the dignity value system is virtue, which is a matter of scope in its nature, i.e., any choices against virtue should be excluded when choosing end-of-life medical treatment. Although rules and laws must be strictly adhered to when actively exercising the right to dispose of one’s life interests, the boundaries of the right to die with dignity can still be discussed based on some fundamental rules within the commonality of jurisdiction. To sum up, the choice of medical treatment for a patient at the end of life should be governed by the three following rules.

 

 

The theoretical basis for public interests limiting the rights of individuals is rooted in the social contract theory. The will of governments or society is formed through the cession of the private rights of contracting parties, in other words, individuals, so that compulsory social will can safeguard the public interests as a whole.³⁸ As written in Article 51 of the Constitution of the People’s Republic of China, citizens in exercising their freedoms and rights may not infringe upon the interests of the state, of society, or the collective, or upon the lawful freedoms and rights of other citizens.³⁹ In accordance with this principle, individuals, when exercising their right to informed consent at the end of life, cannot infringe on the interests of the public and among conflicts of these two, if any, the former must give way to the latter. For example, to prevent and treat infectious diseases, if a patient’s disease falls within the scope of a notifiable disease or a newly developed infectious disease, then the patient usually is subject to compulsory quarantine or other isolation measures to protect public health. And the exercise of their right to informed consent also needs to give its way to public interests. Even if the patient then expresses his intention to refuse any medical treatment or demands to be discharged, the individual rights will lose their validity in conflict with public interests. 

 

 

If the public interests principles are based on the laws’ “love for others” to restrict patients’ right to informed consent, then the principle of legal paternalism is based on the “love for patients” to restrict their right to informed consent. The principle of legal paternalism is based on the premise that human beings are not entirely rational individuals, and when there is a chance that they may make decisions that can seriously harm their interests or that they may be unable to make choices which are in their interests, the law will act as “a father” and make decisions for them.⁴⁰The restriction of the principle of legal paternalism on patients’ right to consent is a byproduct of a recent game between medical paternalism and the patients’ rights movement. With the revelation of Nazi doctors’ human experimentation after the Second World War, the legitimacy of traditional medical paternalism started to be questioned. And in the wake of human rights movements, patients started to fight for their autonomy in making medical decisions. But paying excessive attention to rights will turn doctors’ medical treatment into dramas where they try to avoid making any conflicts, cautiously but fearfully. And doctors may fall victim to illegal acts targeting medical staff and institutions. It is not until the law, as a neutral subject, intervenes between medical staff and patients, that medical paternalism will be placed within a legal framework. The law entitles patients with the right to informed consent, and meanwhile gives doctors the right to perform medical treatment without patients’ consent under specific circumstances. Also, medical paternalism is not only confined within the legal framework but also protected by the law. Therefore, medical paternalism can advance into the principle of legal paternalism.

 

The restrictions of legal paternalism on patients’ right to informed consent are mainly reflected in the substituted decision-making by doctors. Article 33 of RAMI and Article 1220 of the Civil Code both stipulate that when offering surgeries to patients in the event of an emergency, where the opinions of a patient are unavailable and there is no immediate family or other relatives on the scene, or other special circumstances are present, the managing physician shall offer a medical treatment plan and implement the plan after obtaining the approval of the principal person in charge of the medical institution or the authorized responsible person. Article 25 of the Doctors Bill (Draft) published on January 20, 2021, for public comments directly stipulate that for emergency and critical cases, doctors shall adopt emergency treatment measures. The essence is that in the event of the failure of both personal decisions and family representations, legal paternalism will be adopted to nominate doctors who have the expertise to protect the patients’ right to life. 

 

 

The principles of public order and good customs are important fundamental principles of modern civil codes, which mean the constraints on autonomy, and in medical contexts, naturally mean restrictions on patients’ right to informed consent. Since the public order always represents the public interests mentioned above, this essay will not introduce it in detail. Good customs refer to the general morality essential for the existence and development of any state and society or the basic ethical requirements respected by a particular society, the meaning of which usually changes with the times.⁴¹ Regarding the restrictions on the right to informed consent, good customs are mainly reflected in the restrictions from filial piety on relatives’ substitute decision-making. Without any living will or advance directive system in China, the relatives of the patient are usually on his or her behalf to make end-of-life medical treatment decisions if the patient at the end of life is unable to express his or her autonomy in accordance with the legal representative system in the Civil Code. There is a type of “death with helpless dignity.” This is a reluctant choice made by patients or family relatives to give up any medical treatment that imposes a too heavy financial burden. Under such a circumstance, families are not maliciously evading their duties to support and treat patients, and therefore we cannot scold families for violating the good customs of helping family members and urge them to spend every penny or shoulder huge debts to treat the patient. And we can only rely on a more established social security and assistance system to avoid such tragedies. In reality, however, there are cases where the patient is still eager for medical treatment while their children give up any resources even when they have the capability just to avoid their responsibility to support and to treat their parents, or where the patient favors a natural death but his or her family members prevent him or her from a natural death maliciously for utilitarian purposes, leaving him or her to live painfully based on artificial means. Usually, the latter is called death with malicious dignity. In this case, the family’s substitute decision is not based on the life dignity of the patient, which not only goes against the patient’s will but also is against the traditional filial piety. Therefore, such decisions will be invalid since they do not conform to the principles of good customs. In reality, however, whether it is death with helpless dignity or death with malicious dignity, the doctors concerned can only receive the external expression of will by “yes” or “no” from the patient or the family and find difficulty in distinguishing the internal values. Therefore, the exercise of the principles of public order and good customs requires the establishment of the death with dignity system, especially the living will system, to confirm the patient’s will in advance and reduce the possibility of death with malicious dignity.

 

Naturally, when the principles mentioned above are exercised to make sure the boundaries of death with dignity, the principle of necessity should also be taken into consideration. The human right to life dignity calls for protection rather than restriction. The purpose of drawing the boundaries is to better safeguard the patient’s autonomous choice to preserve the life dignity in accordance with laws. When a patient’s terminal medical care choice is not against the principles above, the principle of necessity should be maintained, and the decision-making should be decided by private law without excessive interventions. And when any legal intervention is necessary, it should be both lawful and reasonable.

 

 

Guided by the three principles above, how can the specific boundaries of the right to death with dignity be decided? This paper argues that the autonomous choice of the scope of death with dignity should lie between active treatment and natural death. When medical measures are not avoidable, medical means that ease the pain suffered by a patient or extend the life of the patient should be allowed. Meanwhile, any medical treatment including active euthanasia that aims to shorten a person’s life should not be allowed. Those arguments are mainly based on the following reasons.

 

First, from the perspective of public interests, when no distinctions are made, euthanasia and assisted suicide are the same. In other words, the essence of euthanasia is still a kind of conditional suicide. And the act of suicide, however, is not supposed to be regulated by laws but by religions, ethics, and morality. Therefore, even without any legal prohibition regarding euthanasia, it does not necessarily mean that it is legitimate. As a kind of conditional suicide, the legalization of euthanasia can be easily inferred as the legitimacy of suicide and may even cause the abusive use of euthanasia. This not only goes against the values of cherishing life and protecting life advocated by the Communist Party of China and the state but also can easily enable individuals to have a negative attitude toward life. Hence, from the perspective of public interests, euthanasia is still far from enough to fall within the category of death with dignity.

 

Second, from the perspective of legal paternalism, the life of any “child” is equal in the eyes of the “father”, the law, whether being healthy or sick, young or old. Likewise, the value of people at different stages of life is equal and the law will not deny the value of a particular life because of illness or getting old. This ideology is also reflected in Chinas’ fight against the Covid-19 pandemic when foreign countries replaced elderly patients with young patients in intensive care units with limited medical resources.⁴² Xi Jinping, General Secretary of the Central Committee of the Communist Party of China (CPC) and Chinese President, relentlessly stressed that “we must do our best to save our patients and to leave no one behind.”⁴³ This showcased the difference between the people-centered and egalitarian view of life in a socialist system and the utilitarian view of life in a capitalist system.⁴⁴ Hence, on the issue of euthanasia, guided by the legislative value that all lives are equal in China, even if patients themselves want to turn to euthanasia, this should still not be recognized by the law, as it denies the value of life

 

Finally, from the perspective of the principles of public order and good customs, it has not yet been decided whether euthanasia is based on goodwill or whether it goes against the original purpose of medicine to cure people even if it is the intention of patients themselves within the scope of morality and ethics. And should these seemingly controversial questions related to morality or ethics be answered by the law? The law is only the minimum of morality and ethics, and the good customs recognized by the law are also just the lowest levels of morality and ethics that have long been acknowledged and respected by society. Therefore, since euthanasia is morally and ethically controversial, and has not been widely acknowledged by social morality, the law should not consider it yet.

 

 

From life safety to life dignity, the connotation of the right to life has been constantly broadened and explored with the development of modern medical technologies and life technologies. In the field of terminal medical care, which is mostly linked to the right to life, we not only need to legally protect the life dignity of patients at the end of their life but also need to prevent death with dignity from being alienated into a fixed form of death or even being abused in this process. Starting from the dignity value system of equality, freedom, and virtue to explore the specific connotations and realistic needs of life dignity within the terminal medical care context and to further explore its basis and boundaries for the rights, are not only a necessary foundation for the legal system of death with dignity. Against the backdrop of increasing ageing, they are also the effective guarantee to meet the life and health needs of Chinese citizens by making full use of China’s public welfare characteristic of the medical and healthcare industry.

 

(Translated by JIA Binrui and FENG Zhuoya)

 

* CHEN Yunliang ( 陈云良 ), Professor, Medical and Health Law Research Center, Central South University.

 

** CHEN Weiwei ( 陈伟伟 ), Doctoral Student, Medical and Health Law Research Center, Central South University. The essay is a phased result of Legalization of Basic Medical Security, a major research project of philosophy and social sciences of the Ministry of Education in 2014 (14JZD025).

 

1. During the Two Sessions in 2020, the debate on whether “death with dignity is euthanasia” has been much discussed on the Internet, which indirectly reflected the disagreements and contradictions on the concept of death with dignity in China. “Discussion with Mr. Shen Deyong,” Luo Diandian. 

 

2. In Re Quinlan, 348 A.2d 801 (N.J. Super. Ct. App. Div. 1975); In Re Quinlan, 355 A.2d 647 (N.J. Super. Ct. App. Div. 1976).

 

3. Shimizu Akemi, “Death with Dignity”, translated by Wang Xiangchu. Medicine and Philosophy 6 (1985): 53.

 

4. Zhang Mingkai, Science of Criminal Law (4th edition) (Beijing: Law Press China, 2011), 1870; Katsunori Kai, Death with Dignity from the Perspective of Criminal Law”, translated by Ren Jihong, in Research on Criminal Law (vol. 2) (Beijing: China People's Public Security University Press, 2008), 57-60.

 

5. Wang Yue, “On Death with Dignity”, Journal of Jiangsu Police Institute 3 (2012): 16-21. Ye Li, “A Research on Legalization of Death with Dignity” (Master thesis, Hunan University, 2010).

 

6. Liu Jianli, “Criminal Law’s Boundary of Death with Dignity”, Law Science 9 (2019): 15-29; Suemichi Yasuyuki, “The latest study in France on death with dignity (stopping treatment)”, Nanshan Law 3·4, vol. 43 (2020): 106 and below.

 

7. Searching “death with dignity” on CNKI.net (China National Knowledge Infrastructure) on 5 November 2020, 201 Chinese documentswere found. Removing irrelevant documents, repeatedly uploaded documents and documents that cannot be downloaded, 138 results were left, among which 108 made general introductions of death with dignity. 104(96.3%) believed that death with dignity refers to refusing life-support measures.

 

8. Li Yaming, “Living Will and Death with Dignity”, Philosophical Trends 4 (2014): 79-84.

 

9. Sui Suli, “Discussion on the Issue of Living Will”, China Heath Law 2 (2014): 7-11.

 

10. Walter W. Sackett, “Death with Dignity”, Southern Medical Journal 3 (1971): 330-332.

 

11. In Re Quinlan, 355 A.2d 647 (N.J. Super. Ct. App. Div. 1976).

 

12. Brian A. Garner ed., Black’s Law Dictionary (St. Paul, MN: Thomson Reuters, 2019), 4977.

 

13. For example, some scholars believe that the concept of virtue was included in Plato’s soul theory; the concept of reason is covered in Aristotle's theory of human essence, and the concept of dignity proposed by Cicero and Kant also involved the notion of virtue. These thoughts are recognized as the view of dignity in ancient Greece. Liu Rui, Kant's Theory of Dignity and Its Practical Enlightenment (Beijing: China Social Sciences Press, 2013), 18-22.

 

14. Marcus Tullius Cicero, On Duties, trans. Wang Huansheng (Beijing: China University of Political Science and Law Press, 1999), 19.

 

15. Peng Zhongli, “Obligation without the Concept of Rights: Overview, Reflection and Mirror Value of the Obligation View of Ancient Natural Law,” Law-based Society 5 (2020): 13-21.

 

16. Edgar Bodenheimer, Jurisprudence: The Philosophy and Method of the Law, trans. Deng Zhenglai and Ji Jingwu (Beijing: Huaxia Publishing House, 1987), 23.

 

17. Yang Yi, “Chinese and Western Thinkers’Analysis on ‘Human Dignity’”, Hebei Law Science 1 (2012): 36.

 

18. Central Compilation and Translation Bureau, The Collected Works of Karl Marx and Engels I (Beijing: People’s Publishing House, 1956), 381.

 

19. Giovanni Pico della Mirandola, The Oration on the Dignity of Man, trans. Gu Chaoyi and Fan Honggu (Beijing: Peking University Press, 2010), 25.

 

20. Li Qiuling ed., Immanuel Kant's Werke vol. 6 (Beijing: China Renmin University Press, 2007), 249.

 

21. Qu Xiangfei, “Human Dignity and Human Rights Protection”, Human Rights 2 (2013): 29-32.

 

22. Wang Yunling, “Research on the Dignity of Death in the Context of Modern Medicine” (PhD diss., Shandong University, 2011).

 

23. Charles Robert Darwin, On the Origin of Species, trans. Miao Desui (Nanjing: Yilin Press, 2013).

 

24. Han Dayuan, The Constitutional Logic of the Right to Life (Nanjing: Yilin Press, 2012), 9.

 

25. John Locke, The Second Treatise of Government: An Essay Concerning the True Original, Extent, and End of Civil Government, trans. Ye Qifang and Qu Junong (Beijing: The Commercial Press, 1996), 6.

 

26. Studies of both the positive and negative attributes of the right to life usually lead to different conclusions. Some scholars, based on the German fundamental rights theory, argue that negative attributes are rights to be respected and tolerated while positive attributes are rights to be entitled and exercised. Zhou Gangzhi, “On ‘Negative’ Rights and ‘Positive’ Rights — An Empirical Analysis of the Nature of Constitutional Rights in China”, Law Review 3 (2015); Chen Yunliang, “The Formalized Construction of the Right to Health”, China Legal Science 5 (2019); Changjian and Wangxue, “The Conflicts about the Protection of the Right to Life and its Solutions under the Covid-19 Epidemic”, Nankai Journal (Philosophy, Literature and Social Science Edition) 4 (2020). This essay aims to adopt the perspective that classifies the right to life according to its modes of triggering and aims. The negative right to life refers to the mode of （Continued on Next Page）（Continued）behavior that is triggered by the infringement of one’s right, based on the purpose of defending one’s life from any unlawful infringement. The positive right to life refers to the mode of behavior that is actively triggered by the subject of the right to life, aiming to actively dispose ones’ life interests and to enjoy life dignity and values. Wang Liming, “The Attributes of Personality Rights: from Passive Defense to Active Use”, Peking University Law Journal 4 (2018): 845-861.

 

27. Wang Liming and Yang Lixin, Personality Rights and Press Infringement (Beijing: China Fangzheng Press, 2000), 220.

 

28. Yin Tian, “A Legal Discussion of the Specific Personality Rights of Natural Persons”, Journal of the Henan Academy of Political and Legal Administrative 3 (2004): 17-33.

 

29. Falkel Boyton, “The Protection of Personality Rights in Germany and its Recent Development”, translated by Ouyang Fen, in Sino-German Legal Forum vol. 1 (Nanjing: Nanjing University Press, 2004), 88-94.

 

30. Han Dayuan, “On the Constitutional Boundaries of Euthanasia Legislation”, Tsinghua China Law Review 5 (2011): 34-33.

 

31. Zhou Ping and Yan Yonghe, “Theoretical Review and Institutional Construction of the Right to Dispose one’s Life Interests in the Context of Modern Science and Technology: The Improvement of the Legislation of the Right to Life in the Personality Rights Section of the Civil Code”, Jinan Journal (Philosophy, Literature and Social Science Edition) 1 (2019): 111-122.

 

32. Wang Liming, “On the Legality and Openness of Personality Rights”, Business and Economic Law Review 1 (2018): 17-41. 

 

33. Yang Lixin, On Law of Personal Rights (Beijing: People’s Court Press, 2006), 392-394.

 

34. Slater v. Baker & Stapelton, 95 Eng. Rep 860 (K.B. 1767).

 

35. Pratt v. Davis, 118 111. App. 161 (1905).

 

36. Schloendorff v. The Society of New York Hospital, 105 N.E. 92 (1914).

 

37. Salgo v. Leland Stanford Jr. University Board of Trustees, 154 Cal/App. 2d 560, 317 P.2d 170 (1957).

 

38. Jean-Jacques Rousseau, The Social Contract, trans. Pang Shanshan (Beijing: Guangming Daily Press, 2009), 12-15.

 

39. The Constitution of the People’s Republic of China, Article 51, “Citizens of the People's Republic of China, in exercising their freedoms and rights, may not infringe upon the interests of the state, of society or of the collective, or upon the lawful freedoms and rights of other citizens”. 

 

40. Sun Xiaoxia and Guo Chunzhen, “The Applicability of Legal Paternalism in China”, Social Sciences in China 1 (2006): 48-49.

 

41. Liang Huixing, “The Market Economy and the Principles of Public Order and Good Customs”, Journal of the Graduate School of Chinese Academy of Social Sciences 6 (1993): 21-31.

 

42. Dave Archard and Arthur Caplan, “Is It Wrong to Prioritize Younger Patients with COVID-19?”, BMJ, 22 April, 2020.

 

43. Xi Jinping, “Speech at the National Commendation Conference for Fighting Covid-19”, People’s Daily, September 9, 2020.

 

44. Mao Junxiang, “The Hypocrisy of US-style Equality from the Perspective of the Prevention and Control”, People’s Daily, July 6, 2020.