Confucian Society and Chinese Bioethics

Confucian ethical tradition attaches great importance to the virtue of ren (benevolence) and xiao (filial piety).^{Footnote 19} From a Confucian viewpoint, the individual human being is incomplete without belonging to a family.^{Footnote 20} Confucian societies (e.g., Singapore and China), therefore, value close family ties and attach great importance to the role of the family when drafting social policies.^{Footnote 21} To a large extent, this viewpoint decides the family-based character of the healthcare system in these societies, such as emphasizing the role of the family in healthcare decisionmaking.

As a Confucian society, China preserves the tradition that family plays a crucial role in healthcare decisionmaking.^{Footnote 22} As Ruiping Fan states, “China medical ethics…remains committed to hiding the truth as well as to lying when necessary to achieve the family’s view of the best interests of patients.”^{Footnote 23}

In most cases, physicians would comply with the opinions of family members even when the patient is competent.^{Footnote 24} This indicates that Chinese bioethics assigns the family a privileged position in the essential dimensions of healthcare (e.g., informed consent and decisionmaking), thus differing from Western bioethics, which prioritizes patient autonomy. But laying stress on the importance of family in healthcare does not equate to Chinese bioethics taking patient autonomy for granted. On the contrary, it attaches great importance to protecting patient autonomy, because family members are the people who are supposed to know the patient best, and who are able to provide the best interpretation of patient expectations and preferences, and who can, therefore, make the most appropriate healthcare decisions in the best interests of the patient.^{Footnote 25} Furthermore, with family support, patients are believed to be better prepared both psychologically and physically.^{Footnote 26} Contrary to the traditional relationship between one physician and one patient, Chinese bioethics tends to cultivate the doctor–patient relationship with a strong involvement of family members. Studies show that in Confucian societies, patients, especially older ones, are likely to give up life-sustaining treatments for the sake of reducing the financial burden on their family members.^{Footnote 27} Involving family members in healthcare is, therefore, a way of preventing such self-sacrificing behavior. Family support is also of great importance for patients who need long-term care (e.g., the elderly with disabilities) or who have life-threatening illnesses (e.g., a severe heart attack or cancer). Studies indicate that family support is a primary factor influencing the survival rate of such patients.^{Footnote 28}

The Confucian ethical tradition thus underpins Chinese bioethics in terms of involving family in healthcare, thereby providing a cultural and ethical foundation for engaging patients at the household level in China.

Household Registration System

The household registration system (hukou) has been in operation since 1949 for the administration of China’s residents. People born legally in China acquire a personal registration card (hukou page) to be added to a household registration record (hukou booklet). The household registration record is issued per family; it thus certifies not only the legal residence of a citizen, but, more importantly, the relationships among family members.

The household registration system exerts a significant influence on access to social benefits, such as education and healthcare.^{Footnote 29} At the very beginning, the household registration record was designed to identify an individual as a permanent resident of a specific place, either rural (agricultural household registration record) or urban (non-agricultural household registration record). Studies show that it is this categorization that has generated the inequality in the social benefits in China so fundamentally, in particular the access to healthcare.^{Footnote 30} This argument may be partially true, but the negative effects resulting from this classification should be eliminated with the implementation of the Guiding Opinion of the State Council on Deepening the Reform of the Household Registration System in 2014.^{Footnote 31} Following the Guiding Opinion, the reform focused on the innovation of population management by abolishing classification of the agricultural and non-agricultural household registration records.

This ongoing household registration system reform is therefore believed to provide administrative support for corresponding policies regarding patients’ household engagement, such as contracting each family as a unit with general practitioners (GPs), and creating a household-based medical file system.

Integrated Health Insurance

Influenced by the rural-urban household registration system, China’s health insurance system also features a similar classification (with three basic types of health insurance schemes): people born in the rural areas participate in a health insurance scheme called the New Rural Cooperative Medical Scheme (NRCMS), people born and employed in urban China participate in the Urban Employees’ Basic Medical Insurance (UEBMI), and people born in urban China but without employment participate in the Urban Residents’ Basic Medical Insurance (URBMI). These three schemes differ slightly in terms of their reimbursement rates and benefit package. Some scholars argue that the different reimbursement rates may aggravate unequal accessibility to healthcare in China,^{Footnote 32} but de facto, the casual relation is very weak, which can be demonstrated by the example of UEBMI and URBMI.

For quite a long time, sharing social medical insurance with family members has been customary among urban residents. In other words, if the patient him- or herself has been insured by the URBMI, but his or her father is insured by the UEBMI and the reimbursement rate of the URBMI is slightly lower than that of the UEBMI, it would not be a surprise that the father is willing to use his health insurance to help the patient to get medication and treatment not included in the URBMI. However, it was seen as dishonest behavior in the past and, therefore, prohibited at that time. Nowadays, because of the strong incentives of the mass population to share their social medical insurance, more and more local governments have selected pilot cities to implement a household-based “sharing insurance” in the urban areas of China.^{Footnote 33} Furthermore, scholars even advocate integrating all three health insurance schemes into one household-based rural-urban basic health insurance scheme.^{Footnote 34}

Although the integration of these health insurance schemes is still under discussion, the direction of these discussions has already indicated the potential feasibility of engaging patients at the household level in China. More importantly, it is believed that integrated health insurance schemes would contribute to the effectiveness of household-based engagement in terms of providing financial support.

Legislation in Relation to Family and Healthcare

Although China, like many other countries, does not have a unified health law, China’s legislation relating to family and healthcare comprises plenty of regulations, such as Article 15 of the Law on Protection of the Rights and Interests of the Elderly (2015 Amendment), which stipulates filial responsibility; Article 11 of the Law on the Protection of Minors (2012 Amendment), which regulates parental responsibility; Article 15 of the Law on Blood Donation; Article 21 of the Mental Health Law; and four regulations (i.e., Article 20, Article 21, Article 26, and Article 27) of the Marriage Law relating to reciprocal responsibility among family members. Article 26 of the Law on Practising Doctors (2009 Amendment) stipulates the involvement of family in the informed consent.^{Footnote 35}

Regarding eldercare and filial responsibility, in the Confucian ethical tradition, the virtue of respecting and caring for older generations in a family is named xiao (filial piety). Xiao is not only a moral virtue that is valued and advocated by Chinese society, it is also a mandatory responsibility affirmed by China’s legislation, such as Article 15 of the Law on Protection of the Rights and Interests of the Elderly (2015 Amendment): “The supporters shall ensure that the elderly suffering from illness receive timely treatment and care, and shall pay medical expenses for the elderly in financial hardship. For the elderly who cannot take care of themselves, their supporters shall bear the responsibility of taking care of them; and if they cannot take care of the elderly in person, they may, according to the will of the elderly, delegate the responsibility of caring to other individuals or institutions.”^{Footnote 36}

As stated in the second paragraph of Article 14 of the Law on Protection of the Rights and Interests of the Elderly, “supporters” in this law refers mainly to the children of the elderly. Accordingly, it is stipulated in law that children owe their parents a duty of medical care. The value of family involvement is, therefore, clearly affirmed. Yet some scholars express their concern at the effectiveness of enforcing this Article, because parents may be reluctant to bring a lawsuit against their children.^{Footnote 37}

Another typical example of family involvement relates to informed consent. In Western bioethics, informed consent should be given by the patient except in certain circumstances, such as emergency cases or situations in which patients exercise their right not to know. However, Article 26 of the Law on Practising Doctors (2009 Amendment) affirms the involvement of the patient’s family when informed consent is required: “Doctors shall tell the patients or their family members the patient’s conditions truthfully. However, care shall be taken to avoid any adverse impact on the patients. Doctors shall get approval from the hospital and the consent of the patient or family members before conducting clinical treatment on an experimental basis.”^{Footnote 38}

This Article carries two layers of meaning: physicians must tell the patient’s condition to the family members truthfully and without delay, but physicians must also take the patient’s family’s expectations and preferences into consideration, along with the patient’s psychological condition, before letting the patient know his or her health condition. It also indicates that, with such a provision, patients cannot exercise any self-sacrificing behavior for the sake of their family, and physicians are able to comply with their truth-telling obligation.

These regulations all legitimize the involvement of family in healthcare, and thus explain the legal reason as to why engaging patients at the household level is feasible in China.

Building Health Literacy: Health Literacy as a Family Asset

As Healthy China 2030 summarized, health literacy is the ability to read and understand health-related information so that people are able to take care of their health.^{Footnote 40} As Don Nutbaum summarized, health literacy can be interpreted from both negative and positive perspectives. The negative perspective interprets health literacy as a risk factor focusing on dealing with the impacts of low health literacy on health outcomes, whereas the positive perspective regards health literacy as an asset, which implies that a high level of knowledge and skills can be beneficial to personal health.^{Footnote 41} Engaging patients at the household level mainly interprets health literacy from the positive perspective, meaning cultivating health literacy as a family asset.

Building health literacy is not merely an individual task, but is a family issue. According to Healthy China 2030, accessible and understandable health information is fundamental to patient engagement; however, health information is merely one prerequisite in assisting patient engagement. Patients with a low level of health literacy are still likely to make more mistakes in understanding and adhering to a physician’s prescribed treatments.^{Footnote 42} Therefore, involving a patient’s family members in assisting that patient to read, understand, and adhere to a physician’s diagnosis and treatment is beneficial and important, especially when considered alongside the evolving telecare services.

Younger generations of the family are generally considered to be more open to accepting and using new technologies such as e-health. Therefore, regarding health literacy as a family asset requires the provision of more opportunities to educate the younger generation in the use of e-health, expecting them to help the family’s older generations. This is not, however, to say that the older generation can shirk their responsibilities in cultivating health literacy. As a family asset, the earlier high health literacy is built, the more beneficial it will be for the family members, especially for the family’s younger generations. Children under a certain age are highly influenced by their parents in terms of forming their eating style, undertaking physical activities, and cultivating their personal characters.^{Footnote 43} The level of the older generation’s health literacy is a decisive factor in controlling the risks of certain illnesses, such as childhood obesity and autism. Here, considering health literacy as a family asset lays more emphasis on the responsibility of the older generation in terms of cultivating a healthy lifestyle.

Strengthening Self-Management Skills: Family Monitoring and Family Support

In accordance with Healthy China 2030, self-management education, self-monitoring, self-administered treatment, and telecare are the essential dimensions of a patient’s self-management skills.^{Footnote 44} These dimensions indicate that the individual patient may face a situation in which he or she is forced to perform certain duties (e.g. recording blood sugar, taking prescribed medication, and performing a rehabilitation practice at home) or to give up addictions (e.g., to drink, cigarettes, or even drugs). But as none of the foregoing are easy to achieve, extra assistance is required, such as support from peers, family, and friends.^{Footnote 45} Here, Healthy China 2030 suggests that patients should participate in self-help groups in order to acquire peer support.^{Footnote 46} Nevertheless, studies show the effectiveness of peer support to have mixed results (positive effects for certain illnesses, but no obvious influence for some others).^{Footnote 47} Concerns are also raised in terms of a patient’s willingness to seek peer support, and the potential negative influence arising from patients’ experience sharing.

Compared with peer support, family support seems to be more emotionally effective and more functional in helping patients handle their illnesses. The relationships (e.g. birth, marriage, or adoption) between family members are acknowledged as a solid source of family support, motivating family members to share their fate with one another voluntarily, but some studies observe that there is a link between family support and certain negative outcomes in healthcare. For example, patients may feel self-blaming or even take self-sacrificing actions for the sake of their families.^{Footnote 48} However, these negative outcomes can be prevented by involving family members at the earliest stage of diagnosis and treatment, such as emphasizing the involvement of the family in the shared decisionmaking healthcare process.

Shared Decisionmaking: Family-Based Informed Consent

Being respectful and responsive to a patient’s expectations and preferences in healthcare stimulates the adoption of a shared decisionmaking process.^{Footnote 49} The shared decisionmaking process, as the essential element of the PCIC delivery model, is believed to be beneficial to a physician’s diagnosis and treatment, not only in terms of improving the improvement and effectiveness of healthcare services, but also in restoring trust in the doctor–patient relationship.

It is noteworthy that a difference exists between Western and Chinese bioethics in how to interpret the term “shared.” In many Western countries, “shared” means that patients and their physicians are working together to discuss treatment plans and to set treatment goals. In this sense of “shared,” respecting and protecting patient autonomy is the “golden rule” guiding the healthcare decisionmaking process. For example, patients in the Netherlands are entitled to a “right not to know.”^{Footnote 50} In effect, this leaves it up to the patient rather than the family to decide whether he or she will be told certain healthcare information. Even in the most extreme cases, in which telling the truth may impose a heavy psychological burden on the patient, physicians still need to inform the patient rather than the family when the patient’s health condition allows.^{Footnote 51}

As already discussed, Chinese bioethics attaches great importance to the role of family in healthcare. Accordingly, “shared” in the Chinese context should mean joint efforts not only by patients and their physicians, but also by patients’ family members. There are several evidence-based studies demonstrating that treatment plans are usually finalized on the basis of the opinions of patients’ family members in China.^{Footnote 52} Therefore, in addition to professional knowledge and patient preferences, physicians should also take the expectations of the patient’s family members into consideration, or even assign priority to the opinions of the patient’s family members, when drawing up the treatment plan. Involving family in the shared decisionmaking process has already been put into practice by some local governments in China. For example, Shanghai has implemented a family doctor system that encourages patients and families to exercise joint efforts in setting treatment plans and goals.^{Footnote 53}

Creating a Supportive Environment: Healthy Families as a Parallel Pathway

Healthy China 2030 concentrates on creating a supportive environment by developing healthy cities and using environmental “nudges”^{Footnote 54} to complement regulations. To date, 10 cities have joined the healthy cities movement as pilot cities in China.^{Footnote 55} Although people’s health is affected de facto by the interactions of environmental and social factors, developing healthy families is likely to bring benefits to the individual patient more directly than promoting healthy cities would. But the intention is not to replace the healthy cities movement with healthy families; it is rather to adopt the promotion of healthy families as a parallel pathway for engaging the patient. Developing healthy families will also contribute to the development of healthy cities, because the family is always regarded as the basic societal unit.

Developing healthy families should be approached with corresponding institutional support. Here, the Chinese government has responded actively. Taking the field of primary care as an example, the Chinese government has initiated nationwide implementation of GP services aimed at establishing and strengthening the primary care gatekeeping.^{Footnote 56} The system’s design mandates that GP services are administered on the basis of Chinese households. In other words, it is each household rather than the individual patient which is encouraged to contract a GP who practices medicine in the neighborhood. Meanwhile, the household registration system and the integrated reform of the health insurance schemes are paving the way for contracting GP services that are household based.

Another example of providing institutional support for healthy families is to create one united medical file for each household, along with the nationwide implementation of the GP services. The household-based medical file will be particularly helpful for detecting and diagnosing illnesses, especially hereditary diseases, at the earliest stage. As the responsible party, GPs are the most appropriate candidates to keep their clients’ medical files confidential. They may only release an individual patient’s health information if required by law or a patient’s family members. Although this statement appears to conflict with Western bioethics, which prioritizes respect for, and the protection of, patient autonomy, it is not prohibited by Chinese bioethics.